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Protocols

PhenX Protocol Domain/Collection

San Diego Population Study (SDPS) & The Multicentre Aneurysm Screening Study (MASS), 2002
Cardiovascular

Healthy Pathways - Academic Performance Child Self-Report
Pediatric Development

Healthy Pathways - Academic Performance Parent or Caregiver Report
Pediatric Development

National Health Interview Survey (NHIS) Utilization Questionnaire, 2020
History, Treatment and Outcomes

Health Information National Trends Survey (HINTS), Annotated Form, Full-Content, Cycle 2, 2018
Information Resources

Behavioral Risk Factor Surveillance System State (BRFSS) Questionnaire, 2004
Suicide

Gill, T.M., et al. A program to prevent functional decline in physically frail, elderly persons who live at home. NEW ENGL J MED, 2002
Geriatrics

Malinowski AK, et al. Distinct maternal and fetal pregnancy outcomes in women with sickle cell disease can be predicted using routine clinical and laboratory data. Br J Haematol. 2021

Sickle Cell Disease Obstetric Multi-Disciplinary Care Programme: Prospective Multi-Centre Cohort Study (SCOB-II).

SCD Pregnancy

Drug Effects Questionnaire (DEQ)
Substance-specific Intermediate Phenotypes

Biphasic Alcohol Effects Scale (BAES)
Substance-specific Intermediate Phenotypes

Addiction Research Center Inventory (ARCI)
Substance-specific Intermediate Phenotypes

Cigarette Evaluation Questionnaire (CEQ)
Substance-specific Intermediate Phenotypes

Self-Rating of the Effects of Alcohol (SRE)
Substance-specific Intermediate Phenotypes

Pomerleau et al, Early experiences with tobacco among women smokers, ex-smokers, and never-smokers, ADDICTION, 1998
Substance-specific Intermediate Phenotypes

Vineland Adaptive Behavior Scales., 2nd ed. (VINELAND-II)
SCD Neurology, Quality of Life, and Health Services

Addiction Severity Index (ASI)
Assessment of Substance Use and Substance Use Disorders

Kotelchuck Index (Adequacy of Prenatal Care Utilization (APNCU))
Pregnancy

Validated Hemophilia Regimen Treatment Adherence Scale - On-Demand (VERITAS-PRN(TM))
Hemophilia Inhibitor

Adherence to Refills and Medications Scale (ARMS)
Smoking Cessation, Harm Reduction and Biomarkers

Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro(TM))
Hemophilia Inhibitor

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Obesity

Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) Checklist for Study or Intervention Planning
Genomic Medicine Implementation

Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), short form
SCD Neurology, Quality of Life, and Health Services

Medical Expenditure Panel Survey Household Component (MEPS-HC)
Individual Social Determinants of Health

Medical Expenditure Panel Survey Household Component (MEPS-HC)
Individual Social Determinants of Health

Co-sponsored Tobacco Use Supplement to the Current Population Survey, 2010
Alcohol, Tobacco and Other Substances

The Buss-Perry Aggression Questionnaire (BPAQ)
Suicide

Sly, D., et al. The Florida "truth" anti-tobacco media evaluation: Design, first-year results, and implications for planning future state media evaluations. TOB CONTROL, 2001
Tobacco Regulatory Research: Environment

Atmospheric and Environmental Research (AER) Inc., Relationships of Indoor, Outdoor and Personal Air (RIOPA) Study Activity Questionnaire, 1999
Environmental Exposures

Environmental Protection Agency (EPA), Air Quality Index (AQI)
Structural Social Determinants of Health

National Survey on Drug Use and Health (NSDUH), 2015 & National Institute on Alcohol Abuse and Alcoholism (NIAAA) National Epidemiologic Survey on Alcohol and Related Conditions, Wave 1 (NESARC - WAVE 1)/Alcohol Use Disorder and Associated Disabilities Interview Schedule-IV (AUDADIS-IV)
Alcohol, Tobacco and Other Substances

National Survey on Drug Use and Health (NSDUH), 2015
Alcohol, Tobacco and Other Substances

National Epidemiologic Survey on Alcohol and Related Conditions (NESARC), Wave 1
Alcohol, Tobacco and Other Substances

National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Alcohol, Tobacco and Other Substances

National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Alcohol, Tobacco and Other Substances

National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Alcohol, Tobacco and Other Substances

Virginia Department of Forensic Science, Breath test operator instructional manual, 2005
Assessment of Substance Use and Substance Use Disorders

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Bone and Joint

The Timeline Followback (TLFB)
Tobacco Regulatory Research - Host: Biobehavioral

Cardiovascular Health Study (CHS), Baseline Medical History Questionnaire & Framingham Heart Study (FHS)
Cardiovascular

National Health Interview Survey (NHIS) Family Questionnaire, 2020
Demographics

Brief Adherence Rating Scale (BARS)
Early Psychosis Clinical Services

Extrapyramidal Symptom Rating Scale (ESRS)
Early Psychosis Clinical Services

Composite International Diagnostic Interview Screening Scales (CIDI-SC) 5.0, Anxiety
Psychiatric

Symptom Check List 90 (SCL-90)
Psychiatric

The Screen for Child Anxiety Related Emotional Disorders (SCARED), Parent Report Version
Psychiatric

The Screen for Child Anxiety Related Emotional Disorders (SCARED), Self-Report Version
Psychiatric

Lohman, T. G., et al, Anthropometric standardization reference manual, 1988
Anthropometrics

Framingham Heart Study (FHS), Exams 6 & 29 & Jackson Heart Study (JHS)
Cardiovascular

Davis, M.D., et al. AARC clinical practice guideline: Blood gas analysis and hemoximetry. Respir Care, 2013
Respiratory

A Knee Health Study, The Kellgren-Lawrence Grading Scale, version 2.1, August 2006
Bone and Joint

Automated Self-administered 24-hour Dietary Recall (ASA24)
Nutrition and Dietary Supplements

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011
SCD Cardiovascular, Pulmonary, and Renal

Questionnaire on Pediatric Gastrointestinal Symptoms, Rome III Version (QPGS-RIII)
Gastrointestinal

Questionnaire for functional gastrointestinal disorders (FGIDs), Rome III, adult questionnaire
Gastrointestinal

Questionnaire on Pediatric Gastrointestinal Symptoms, Rome III Version (QPGS-RIII)
Gastrointestinal

National Health and Nutrition Examination Survey (NHANES) III, Adult Household Questionnaire
Gastrointestinal

Avon Longitudinal Study of Parents and Children (ALSPAC), Growing and Changing (8), Mother/Daughter Questionnaire - 97 - 157 Months
Reproductive Health

Avon Longitudinal Study of Parents and Children (ALSPAC), Growing and Changing, Parent/Son Questionnaire- 97 - 157 Months
Reproductive Health

Avon Longitudinal Study of Parents and Children (ALSPAC), Growing and Changing (8), Female Teenage Questionnaire - 175 - 204 Months
Reproductive Health

Avon Longitudinal Study of Parents and Children (ALSPAC), Growing and Changing (8), Male Teenage Questionnaire
Reproductive Health

Scale for the Assessment and Rating of Ataxia (SARA)
Rare Genetic Conditions

The Adult Attention-Deficit Hyperactivity Disorder Self-Report Scale (ASRS-v1.1)
Psychiatric

The Strengths and Weaknesses of Attention-Deficit/Hyperactivity Disorder Symptoms and Normal Behavior Scale (SWAN)
Psychiatric

The Dot Probe Task
Post-traumatic Stress Psychopathology (including PTSD)

National Health and Nutrition Examination Survey (NHANES), Audiometry Protocol, 2015-2016
Speech, Language and Hearing

Auditory Continuous Performance Test (ACPT) Battery
Early Psychosis Translational Research

National Health and Nutrition Examination Survey (NHANES), Questionnaire (SP) AUDIOMETRY - AUQ Target Group: SPs 1+, 2011
Geriatrics

Consensus Auditory-Perceptual Evaluation of Voice (CAPE-V)
Speech, Language and Hearing

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), Affected Sib-Pair Exam Form
Diabetes

Daud, A. N. A., et al. (2017). Knowledge and attitude regarding pharmacogenetics among formerly pregnant women in the Netherlands and their interest in pharmacogenetic research. BMC Pregnancy Childbirth, 17(1), 120.
Genomic Medicine Implementation

Modified AX-Continuous Performance Test (AX-CPT)
Early Psychosis Translational Research

Bath Ankylosing Spondylitis Disease Activity Index (BASDAI)
Bone and Joint

Health, Aging and Body Composition (Health ABC) Study, Operations Manual Volume XIII, One Leg Stand, 2007
Geriatrics

Hispanic Community Health Study (HCHS)/Study of Latinos (SOL), Nutritional and Physical Activity Assessment Study (SOLNAS), 2012
Obesity

The Baseline and Trauma Challenge Psychophysiological Recordings protocol
Post-traumatic Stress Psychopathology (including PTSD)

University of North Carolina Genomic Knowledge Scale (UNC-GKS)
Genomic Medicine Implementation

The Cigarette Purchase Task (CPT)
Tobacco Regulatory Research - Host: Social/Cognitive

Neuropsychiatric Inventory-Questionnaire (NPI-Q)
Geriatrics

Global Appraisal of Individual Needs - Short Screener (GAIN-SS)
Substance Use-related Co-morbidities and Health-related Outcomes

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011
SCD Cardiovascular, Pulmonary, and Renal

Determination of cotinine in saliva using liquid chromatography - tandem mass spectrometry (LC-MS/MS)
Respiratory

Determination of cotinine in serum or plasma using liquid chromatography - tandem mass spectrometry (LC-MS/MS)
Respiratory

Determination of cotinine in urine using liquid chromatography - tandem mass spectrometry (LC-MS/MS)
Respiratory

Center for Disease Control and Prevention (CDC), National Vital Statistics System Birth Certificate Section, 2005-2006
Anthropometrics

Krebs, N. F., et al. Complementary feeding: A Global Network cluster randomized controlled trial manual of operations, BMC PEDIATR, 2011
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), 2005-2006
Anthropometrics

American Community Survey (ACS), 2008
Demographics

American Community Survey (ACS), 2008
Demographics

American Community Survey (ACS), 2008
Demographics

Coronary Artery Risk Development in Young Adults (CARDIA), Y20 CARDIA VII & Framingham Heart Study (FHS), Generation 3
Cardiovascular

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research Core: Tier 2

National Health and Nutrition Examination Survey (NHANES), body composition procedures manual, 2011-2012
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2007
Anthropometrics

National Health and Nutrition Examination Survey III (NHANES III), Anthropometry Procedures Manual, 1988
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2009-2010
Anthropometrics

Body Figure Perceptions Scales from Collins, Stunkard et al., and Pulvers et al.
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometrics procedure manual, 2007-2008
Behaviors and Risks

National Health and Nutrition Examination Survey (NHANES), Anthropometry procedures, 2007-2008
Rare Genetic Conditions

Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010
SCD Cardiovascular, Pulmonary, and Renal

Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010
SCD Cardiovascular, Pulmonary, and Renal

Tanner and Whitehouse Method (TW2)
Rare Genetic Conditions

Ragland, J.D., et al. Functional and neuroanatomic specificity of episodic memory dysfunction in schizophrenia: A functional magnetic resonance imaging study of the relational and item-specific encoding task. JAMA Psychiatry, 2015
Early Psychosis Translational Research

The Brain-Body Center Sensory Scales (BBCSS)
Eating Disorders

Infant Feeding Practices Study II (IFPS-II), 2005, Postnatal Month 12
Oral Health

National Health and Nutrition Examination Survey (NHANES) Diet Behavior and Nutrition Questionnaire, 2021-2023
Nutrition and Dietary Supplements

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5)
Psychosocial and Mental Health

The Strengths and Difficulties Questionnaire (SDQ)
Mental Health Research Core: Tier 1

National Institutes of Health (NIH), COPDGene Study Clinical Center Manual of Procedures, 2009
Respiratory

Olweus Bully-Victim Questionnaire-Revised (OBVQ-R)
Pediatric Development

Medical Expenditure Panel Survey (MEPS)
Cancer Outcomes and Survivorship

National Health and Nutrition Examination Survey (NHANES), C-Reactive Protein (CRP), 2009-2010
Early Psychosis Translational Research

Fred Hutchinson Cancer Research Center, Caffeine Questionnaire, 2004
Nutrition and Dietary Supplements

National Health Interview Survey (NHIS) Diet and Nutrition Questionnaire, 2005
Nutrition and Dietary Supplements

Centers for Disease Control and Prevention (CDC), Eating and Activity Survey Trial, Calcium Food Frequency Questionnaire, 2002
Nutrition and Dietary Supplements

Prostate, Lung, Colorectal and Ovarian (PLCO), Cancer Screening Trial, Baseline Questionnaire for Male (BQMC) & Female (BQM3), 10/99
Cancer

Abramson Cancer Center, Health History Questionnaire 9/2006
Cancer

The California Teachers Study, Follow Up Survey 4, 2005-2006
Cancer

Kline, G., et al. Estimation of VO2max from a one-mile track walk, gender, age, and body weight. MED SCI SPORT EXER, 1987
Physical Activity and Physical Fitness

Ebbeling, E.B., et al. Development of a single-stage submaximal treadmill walking test. MED SCI SPORT EXER, 1991
Physical Activity and Physical Fitness

Jurca, R.,et al, Assessing cardiorespiratory fitness without performing exercise testing, AM J PREV MED, 2005
Physical Activity and Physical Fitness

National Survey of Family Growth (NFSG), 2013-2015
Reproductive Health

National Survey of Family Growth (NFSG), Male, 2013-2015
Reproductive Health

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2009-2010
Gastrointestinal

Shiffman, S., et al. Analyzing milestones in smoking cessation: illustration in a nicotine patch trial in adult smokers. J Consult Clin Psych, 2006.
Smoking Cessation, Harm Reduction and Biomarkers

National Human Exposure Assessment Survey (NHEXAS), 1995
Environmental Exposures

Genetic Epidemiology of COPD Clinical Center Manual of Procedures, 2014
Respiratory

ACR-SPR, Practice Parameter for the Performance of Chest Radiography, 2014
SCD Cardiovascular, Pulmonary, and Renal

The Child Eating Behavior Questionnaire (CEBQ)
Eating Disorders

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2007
Anthropometrics

Child Oral Health Impact Profile-Short Form 19 (COHIP-SF 19)
Rare Genetic Conditions

National Longitudinal Study on Adolescent Health (Add Health), 1995
Social Environments

NICHD Study of Early Child Care and YOuth Development, Phase 1, 1991-1995 [United States]
Pediatric Development

NICHD Study of Early Child Care and Youth Development: Phase II, 1996-1999 [United States]. The NICHD Study of Early Child Care Form 39C-a Revision 06/16/95
Pediatric Development

Childhood Trauma Questionnaire (CTQ), 1997
Social Environments

Avon Longitudinal Study of Parents and Children - Mother and Home (Section C)
Pediatric Development

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Infectious Diseases and Immunity

Self-Administered Comorbidity Questionnaire (SCQ)
Cancer Outcomes and Survivorship

The Chronic Stress Scale
Psychosocial

Fagerstrom Test for Nicotine Dependence, 1991
Alcohol, Tobacco and Other Substances

Population Assessment of Tobacco and Health (PATH) Study Wave 3
Alcohol, Tobacco and Other Substances

Population Assessment of Tobacco and Health (PATH) Study Wave 1
Alcohol, Tobacco and Other Substances

The Columbia-Suicide Severity Rating Scale (C-SSRS)©
Suicide

Composite International Diagnostic Interview (CIDI), WHO version, the Suicidality module
Suicide

The Columbia-Suicide Severity Rating Scale (C-SSRS)©
Suicide

The Columbia-Suicide Severity Rating Scale (C-SSRS)©
Suicide

The Columbia-Suicide Severity Rating Scale (C-SSRS)©
Suicide

Composite International Diagnostic Interview (CIDI), WHO version, the Suicidality module
Suicide

The Columbia-Suicide Severity Rating Scale (C-SSRS)©
Suicide

The Columbia-Suicide Severity Rating Scale (C-SSRS)©
Suicide

Clinical Sequencing Evidence-Generating Research Consortium (CSER) Provider Measures - Post-Return of Results Follow-up #1 & Electronic Medical Records and Genomics (eMERGE) Post-Return of Results Provider Follow-up Questionnaire
Genomic Medicine Implementation

Structured Clinical Interview for DSM-5 Disorders - Clinician Version (SCID-5-CV)
Early Psychosis Clinical Services

Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE)
Geriatrics

Dimensional Change Card Sort (DCCS), Border Version
Substance Use-related Neurobehavioral and Cognitive Risk Factors

Dimensional Change Card Sort (DCCS), Standard Version
Substance Use-related Neurobehavioral and Cognitive Risk Factors

Patient-Reported Outcomes Measurement Information System (PROMIS®) - Cognitive Function v2.0 - Short Form 6a
Cancer Outcomes and Survivorship

The Neitz Test of Color Vision
Ocular

Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial (PLCO), Diagnostic Evaluation& Colorectum (DEC3/DCQ3), 07/01
Gastrointestinal

Substance Abuse and Mental Health Services Administration (SAMHSA), Communities That Care (CTC) Youth Survey, 2004
Substance Use-related Psychosocial Risk Factors

National Health and Nutrition Examination Survey (NHANES), Laboratory procedures Manual, 2010
Rare Genetic Conditions

Point of Sale: Pack Analysis Coding Training Manual, 2013
Tobacco Regulatory Research: Environment

National HIV Behavioral Surveillance System, 2010
Substance Use-related Co-morbidities and Health-related Outcomes

Framingham Heart Study
Gastrointestinal

Computerized Neurocognitive Battery (CNB)
Early Psychosis Translational Research

American Community Survey (ACS), 5-year estimates, Concentrated Poverty, 2009-2018
Structural Social Determinants of Health

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedure Manual, 2005-2006
Pregnancy

National Health and Nutrition Examination Survey (NHANES) Laboratory Procedure Manual, 2011-2012
Pregnancy

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedure Manual, 2005-2006
Pregnancy

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedure Manual, 2003-2004
Pregnancy

Centers for Disease Control and Prevention (CDC) Screening Questionnaire for Adult Immunization, 2009
Infectious Diseases and Immunity

Centers for Disease Control and Prevention (CDC), Screening Questionnaire for Child and Teen Immunization, 2009
Infectious Diseases and Immunity

Head Start Family and Child Experiences Survey (FACES), 2006
Oral Health

University of Southern California, The Los Angeles Latino Eye Study (LALES), 2000-2003
Ocular

National Eye Institute, Herpetic Eye Disease Study II, (HEDS II), Recurrence Factors Study Enrollment Checklist, 12/1/95
Ocular

The Coping Responses Inventory for Youth (CRI-Youth)
Psychosocial

The Coping Responses Inventory for Youth (CRI-Youth)
Psychosocial

COVID-19 Experiences (COVEX)
Psychosocial and Mental Health

Coronavirus Anxiety Scale (CAS)
Psychosocial and Mental Health

American Thrombosis and Hemostasis Network (ATHN) dataset Core Data Elements, Version 2.0
Hemophilia Inhibitor

COVID-19 Community Response Survey
Psychosocial and Mental Health

Coronavirus Tracking Survey of the Understanding America Survey (UAS)
Behaviors and Risks

COVID-19 Experiences (COVEX)
Socioeconomic

UK COVID-19 Questionnaire
History, Treatment and Outcomes

RAND American Life Panel Impacts of COVID-19 Survey
Socioeconomic

Coping with COVID-19: Impact on technology use, mobility, food security, depression and social isolation
Psychosocial and Mental Health

RAND 2020 American Life Panel Survey (ALP) on Impacts of COVID-19
Information Resources

All of Us COVID-19 Participant Experience Survey (COPE)
Behaviors and Risks

Coping with COVID-19: Impact on technology use, mobility, food security, depression and social isolation
Behaviors and Risks

Johns Hopkins COVID Long Study
History, Treatment and Outcomes

Long COVID in Children and Young People (The CLoCk Study)
History, Treatment and Outcomes

Huizinga, D., et al, Are there multiple paths to delinquency?, J CRIM LAW CRIM, 1991
Psychosocial

Dunedin Multidisciplinary Health and Development Research Unit (DMHDRU), Dunedin Multidisciplinary Health and Development Study, 1993
Psychosocial

Bidwell, L.C., et al, Effects of abstinence in adolescent tobacco smokers: Withdrawal symptoms, urge, affect, and cue reactivity. NICOTINE TOB RES, 2013
Tobacco Regulatory Research - Host: Biobehavioral

Tri-State Womens Circle of Health Questionnaire, 06/18/07
Cancer

The California Teachers Study, Baseline
Cancer

National Health and Nutrition Examination Survey (NHANES), Screener Module 1, 2019-2020
Demographics

National Health and Nutrition Examination Survey (NHANES), 2019-2020
Demographics

National Survey of Family Growth (NFSG), 2013-2015
Reproductive Health

National Survey of Family Growth (NFSG), Male, 2013-2015
Reproductive Health

Panel Study of Income Dynamics (PSID), 2007
Demographics

National Health and Nutrition Examination Survey (NHANES), Family Questionnaire, 2011-2012
Environmental Exposures

Behavioral Risk Factor Surveillance System (BRFSS), Core Section 8: Demographics, 2018
Demographics

National Health and Nutrition Examination Survey (NHANES) Mobile Examination Center (MEC) Laboratory Procedures Manual, 2013-2014
Pregnancy

National Health and Nutrition Examination Survey (NHANES), Reproductive Health Module, 2021-2023
Pregnancy

The Coronavirus Racial Bias Scale (CRBS)
Ethnicity, Race and Demographics

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007
Geriatrics

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Infectious Diseases and Immunity

National Health Interview Survey (NHIS) Diet and Nutrition Questionnaire, 2005
Nutrition and Dietary Supplements

University of North Carolina at Chapel Hill, Mothers Questionnaire
Environmental Exposures

Iowa Gambling Test™
Substance Use-related Neurobehavioral and Cognitive Risk Factors

Iowa Gambling Test™ - Child version, 2004
Substance Use-related Neurobehavioral and Cognitive Risk Factors

Womens Health Initiative (WHI) & Cardiovascular Health Study (CHS)
Cardiovascular

Monetary-Choice Questionnaire (MCQ)
Substance Use-related Neurobehavioral and Cognitive Risk Factors

National Health and Nutrition Examination Survey (NHANES), Decayed, Missing, or Filled Tooth Surfaces (DMFS) Index, 2003-2004
Oral Health

Health, Aging and Body Composition Study (Health ABC), Oral Health and Dental History Questions
Geriatrics

Composite International Diagnostic Interview Screening Scales (CIDI-SC) 5.0, Depression
Psychiatric

The Quick Inventory of Depressive Symptoms (QIDS)
Psychiatric

Mood and Feelings Questionnaire (MFQ)
Psychiatric

The Cornell Scale for Depression in Dementia
Psychiatric

Geriatric Depression Scale (GDS) - Short Form
Psychiatric

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Lippi, G., et al. Quality standards for sample collection in coagulation testing. Seminars in Thrombosis and Hemostasis, 2012
Hemophilia Inhibitor

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

St. Pierre, T. G., et al. Single spin-echo proton transverse relaxometry of iron-loaded liver. NMR Biomedicine, 2004
SCD Curative Therapies

Garbowski, M. W., Carpenter, J.-P., Smith, G., Roughton, M., Alam, M. H., He, T., Pennell, D. J., & Porter, J. B. (2014). Biopsy-based calibration of T2* magnetic resonance for estimation of liver iron concentration and comparison with R2 Ferriscan. Journal of Cardiovascular Magnetic Resonance, 16, 40.
SCD Curative Therapies

The Reasons for Living (RFL) inventory
Suicide

The Reasons for Living for Adolescents (RFL-A) inventory
Suicide

The Attitudes Towards Suicide Scale (ATTS)
Suicide

The Michigan Neuropathy Screening Instrument (MNSI)
Diabetes

University of Southern California (UCLA), Los Angeles Latino Eye Study (LALES), 2000-2003
Diabetes

The National Health and Nutrition Examination Survey (NHANES), Dietary Screener Questionnaire (DSQ), 2009-2010
Obesity

Three Factor Eating Questionnaire (TFEQ-18)
Obesity

Supplement Frequency Questionnaire (SURE-QX), 2009
Nutrition and Dietary Supplements

Nulliparous Pregnancy Outcomes Study Monitoring Mothers-to-Be (nuMoM2b), Difficulties in Pregnancy, 2010
Pregnancy

Slama, R., et al, Feasibility of the Current-Duration Approach to Studying Human Fecundity, EPIDEMIOLOGY, 2006
Reproductive Health

Pregnancy Study Online (PRESTO), Female Screener and Baseline Questionnaire
Reproductive Health

Slama, R., et al, Epidemiologic tools to study the influence of environmental factors on fecundity and pregnancy-related outcomes, EPIDEMIOL REVs, 2014
Reproductive Health

The Sheehan Disability Scale (SDS)
Post-traumatic Stress Psychopathology (including PTSD)

Oswestry Disability Index (ODI)©, version 2.1a
Rare Genetic Conditions

Monitoring the Future (MTF), 2015
Substance Use-related Community Factors

Major Experiences and Everyday Discrimination Scales
Social Environments

Discrimination in Medical Settings (DMS) scale
Individual Social Determinants of Health

Newcastle Paediatric Mitochondrial Disease Scale (NPMDS), 0-24 months
Rare Genetic Conditions

Newcastle Paediatric Mitochondrial Disease Scale (NPMDS), 12-18 years
Rare Genetic Conditions

Newcastle Paediatric Mitochondrial Disease Scale (NPMDS), 2-11 years
Rare Genetic Conditions

Newcastle Mitochondrial Disease Adult Scale (NMDAS), 12-18 years
Rare Genetic Conditions

Haem-A-QoL
Hemophilia Inhibitor

UPPS Impulsive Behavior Scale
Psychosocial

UPPS-P Impulsive Behavior Scale for Children
Psychosocial

Autonomic Nervous System Questionnaire (ANSQ) American Thoracic Society (ATS) Statement on CCHS (2010)
Rare Genetic Conditions

California Health Interview Survey (CHIS), 2017
Ethnicity, Race and Demographics

Disruptive Behavior Disorders Rating Scale (DBDRS)
Substance Use-related Psychosocial Risk Factors

Centre for Vision Research, Blue Mountains Eye Study (BMES-3), 2002-2004
Ocular

Baltimore Longitudinal Study on Aging (BLSA), Dental Examination
Oral Health

National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Substance Use-related Co-morbidities and Health-related Outcomes

National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Substance Use-related Co-morbidities and Health-related Outcomes

RTI International, Atrazine Exposure Study, Vacuum Cleaner Dust Collection Protocol, 2001
Environmental Exposures

National Health and Nutrition Examination Survey (NHANES), Audiometry Procedures Manual, 2009-2010
Speech, Language and Hearing

Ages & Stages Questionnaires®, Third Edition
Speech, Language and Hearing

Speech and Language Assessment Scale (SLAS)
Speech, Language and Hearing

The Eating Disorder Assessment for DSM-5 (EDA-5)
Eating Disorders

Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) & The Eating Disorder Diagnostic Scale (EDDS-5)
Psychiatric

Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), The Eating Disorder Diagnostic Scale (EDDS)
Psychiatric

Eating Disorder Examination © (EDE), Edition 16.0D
Obesity

Eating Disorder Examination © (EDE), 14th edition, version 14.3, Bariatric Surgery Version (EDE-BSV)
Obesity

Eating Disorder Examination © (EDE) Interview for Children, Edition 16.0D
Obesity

Eating Disorders Examination Questionnaire © (EDE-Q)
Obesity

British Society of Echocardiography (BSE) Education Committee guidelines for a standard transthoracic echocardiogram (TTE)
Rare Genetic Conditions

The Eczema Area and Severity Index (EASI)
Skin

American Community Survey (ACS), 5-year estimates, Educational Attainment, 2013-2017
Structural Social Determinants of Health

National Health and Nutrition Examination Survey (NHANES), Demographics Module, 2019-2020
Demographics

Coronavirus Tracking Survey of the Understanding America Survey (UAS)
Ethnicity, Race and Demographics

ECHO COVID-19 Questionnaire - Adult Primary Version
Psychosocial and Mental Health

ECHO Impacts of COVID-19 Outbreak on Child Parent-Report
Psychosocial and Mental Health

ECHO Impacts of COVID-19 Outbreak on Child Self-Report
Psychosocial and Mental Health

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research Core: Tier 1

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
Hemophilia Inhibitor

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
Hemophilia Inhibitor

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
Hemophilia Inhibitor

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
Hemophilia Inhibitor

Medical and Scientific Advisory Committee (MASAC) of the National Hemophilia Foundation (NHF), 2017
Hemophilia Inhibitor

Child Behavior Checklist for Ages 1 ½ - 5
Pediatric Development

Child Behavior Checklist for Ages 6-18
Pediatric Development

Achenbach System of Empirically Based Assessment (ASEBA) - Adult Self Report (ASR) and Adult Behavior Checklist (ABCL)
Pediatric Development

Patient-Reported Outcomes Measurement Information System® Item Bank, v.1.0
Gastrointestinal

The Positive Affect and Negative Affect Schedule-Expanded Form (PANAS-X)
Psychosocial

Positive Affect and Negative Affect Schedule-Child Form (PANAS-C)
Psychosocial

California Health Interview Survey (CHIS), Adult questionnaire, 2018
Individual Social Determinants of Health

Environmental Protection Agency (EPA), Environmental Justice Screening and Mapping Tool (EJSCREEN)
Structural Social Determinants of Health

Ottman Brief Epilepsy Screener, Self-reported Version
Neurology

Ottman Brief Epilepsy Screener, Proxy-reported Version
Neurology

U.S. Census Bureau, Census 2020, Questionnaire
Demographics

The Trail Making Test - Adult
Neurology

The Behavior Rating Inventory of Executive Function (BRIEF)
Neurology

The Trail Making Test (TMT) for Older Children
Neurology

The Trail Making Test (TMT)
Neurology

Behavior Rating Inventory of Executive Function®-Adult Version (BRIEF®-A)
Neurology

Behavior Rating Inventory of Executive Function® (BRIEF®)
Neurology

The Behavior Rating Inventory of Executive Function® (BRIEF®) - Preschool
Neurology

Six-Minute Walk Test (6MWT)
Respiratory

The Exercise Dependence Scale
Eating Disorders

Oral Facial Cleft Study of Cleft Lip and Palate, Demographics and Medical History
Oral Health

The California Teachers Study, Baseline, Fall 1995
Cancer

Brief Comprehensive Effects of Alcohol questionnaire (B-CEOA)
Substance-specific Intermediate Phenotypes

Stimulant Effect Expectancy Questionnaire (SEEQ)
Substance-specific Intermediate Phenotypes

Marijuana Effect Expectancy Questionnaire (MEEQ)
Substance-specific Intermediate Phenotypes

Prescription Stimulant Expectancy Questionnaire (PSEQ)
Substance-specific Intermediate Phenotypes

The Brief Smoking Consequences Questionnaire-Adult (BSCQ-A)
Substance-specific Intermediate Phenotypes

Sandberg, A, et al, Assessing recent smoking status by measuring exhaled carbon monoxide levels. PLOS ONE, 2011
Tobacco Regulatory Research - Host: Biobehavioral

American Cancer Society (ACS), Cancer Prevention Study II (CPS-II), Mens Baseline Questionnaire, 1982
Environmental Exposures

Population Assessment of Tobacco and Health (PATH) Study: Final Youth Interview, Wave 7 (January 2022 - December 2022) & National Youth Tobacco Survey (NYTS), 2012
Tobacco Regulatory Research Core: Tier 2

Long Island Breast Cancer Study Project (LIBCSP)
Environmental Exposures

Lifetime Traumatic and Victimization History (LTVH)
Psychosocial

Lifetime Traumatic and Victimization History (LTVH)
Psychosocial

The Multi-Ethnic Pediatric Eye Disease Study (MEPEDS), 2002-2008 & Baltimore Pediatric Eye Disease Study (BPEDS), 2003-2007
Ocular

Beaver Dam Eye Study
Ocular

The Multi-Ethnic Pediatric Eye Disease Study (MEPEDS), 2002-2008 & Baltimore Pediatric Eye Disease Study (BPEDS), 2003-2007
Ocular

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Maintenance of Balance, Independent Living, Intellect, and Zest in the Elderly of Boston (MOBILIZE Boston)
Geriatrics

Burden Assessment Scale (BAS)
Early Psychosis Clinical Services

Revised Conflict Tactics Scales (CTS 2), 2003
Social Environments

Conflict Tactics Scales: Parent-Child Version (CTS PC), 2003
Social Environments

Family Environment Scale (FES), 2009
Social Environments

Family Questionnaire (FQ)
Early Psychosis Clinical Services

Systematic Clinical Outcome Routine Evaluation (SCORE-15) Index of Family Functioning and Change
Early Psychosis Clinical Services

My Family Health Portrait (MFHP)
Rare Genetic Conditions

National Institute of Mental Health (NIMH), Family Interview for Genetic Studies (FIGS), 1999
Early Psychosis Translational Research

Family Interview for Genetic Studies (FIGS) - Abbreviated Version
Early Psychosis Translational Research

National Institute on Aging (NIA), Health and Retirement Study, Family History of Dementia and Longevity, 2016
Geriatrics

Multi-Ethnic Study of Arthrosclerosis (MESA) Exam 2, Family History
Diabetes

Womens Health Initiative (WHI), Family History Questionnaire, Version 3
Cardiovascular

Family History of Incarceration Survey (FamHIS)
Individual Social Determinants of Health

Nulliparous Pregnancy Outcomes Study Monitoring Mothers-to-Be (nuMoM2b), Difficulties in Pregnancy, 2011
Pregnancy

Family History Questionnaire
Speech, Language and Hearing

Alcohol Use Disorder and Associated Disabilities Interview Schedule-IV (AUDADIS-IV)
Assessment of Substance Use and Substance Use Disorders

Alcohol Use Disorder and Associated Disabilities Interview Schedule-IV (AUDADIS-IV)
Assessment of Substance Use and Substance Use Disorders

Family Environment Scale (FES), 2009
Social Environments

Substance Abuse and Mental Health Services Administration (SAMHSA), Communities That Care (CTC) Youth Survey, 2004
Substance Use-related Psychosocial Risk Factors

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007
Diabetes

National Health and Nutrition Examination Survey (NHANES), Oral Glucose Tolerance Test (OGTT) Manual, 2007-2008
Diabetes

National Health and Nutrition Examination Survey (NHANES), Oral Glucose Tolerance Test (OGTT) Manual, 2005-2006
Diabetes

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007
Diabetes

Fear of Cancer Recurrence (FCR7)
Cancer Outcomes and Survivorship

Female Contraception Survey
SCD Genitourinary

FertiQoL (Fertility Quality of Life tool)
SCD Genitourinary

Hadlock, F.P., et al. Racial/ethnic standards for fetal groth: the NICHD Fetal Growth Studies. Am J Obstet Gynecol, 2015
Pregnancy

National Health Interview Survey (NHIS) Diet and Nutrition Questionnaire, 2005
Nutrition and Dietary Supplements

Medical Expenditure Panel Survey (MEPS), Experiences with Cancer Self-Administered Questionnaire (SAQ), 2011
Cancer Outcomes and Survivorship

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research Core: Tier 2

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research Core: Tier 2

National Health Interview Survey (NHIS), Dental Care, 1983 & 1989
Oral Health

U.S. Household Food Security Survey Module: Six-Item Short Form, Economic Research Service, USDA, 2012
Socioeconomic

Traditional Retail Food Environment Index (RFEI)
Structural Social Determinants of Health

Framingham Foot Assessment Clinical Tool
Geriatrics

Study of Osteoporotic Fractures (SOF), History of Fractures Questionnaire & Framingham Osteoporosis Study Fracture Assessment
Bone and Joint

National Institute on Aging (NIA), Study of Osteoporotic Fractures (SOF), Frailty Index
Geriatrics

National Health and Nutrition Examination Survey (NHANES), 2003-2004
Obesity

Cooperative Study of Sickle Cell Disease (CSSCD), Form 25 - Painful Episodes
SCD Core: Tier 2

National Health Interview Survey (NHIS) Diet and Nutrition Questionnaire, 2005
Nutrition and Dietary Supplements

Karnofsky Performance Status Scale (KPS)
Cancer Outcomes and Survivorship

Gastroesophageal Reflux Disease Questionnaire (GerdQ)
Gastrointestinal

All of Us Research Program, Participant Provided Information (PPI), 2018
Demographics

The K6
Psychiatric

NIH Toolbox Item Bank/Fixed Form v2.0 - Self-Efficacy (Ages 13-17)
Psychosocial

NIH Toolbox Item Bank/Fixed Form v2.0 - Self-Efficacy (Ages 18+)
Psychosocial

NIH Toolbox Item Bank/Fixed Form v2.0 - Self-Efficacy (Ages 8-12)
Psychosocial

NIH Toolbox Item Bank/Fixed Form v2.0 - Self-Efficacy (Ages 8-12) Parent Report
Psychosocial

The General Well Being Schedule (GWB)
Post-traumatic Stress Psychopathology (including PTSD)

Boston Medical Center, Extremely Low Gestational Age Newborns (ELGAN) Study, Maternal Interview, 2002
Pregnancy

Project Gestational Age
Pregnancy

Nulliparous Pregnancy Outcomes Study Monitoring Mothers-to-Be (nuMoM2b): CLA Prenatal Labs, Version 04
Pregnancy

Montreal Cognitive Assessment (MOCA©)
Neurology

The Ages & Stages Questionnaires®, Third Edition (ASQ®-3)
Neurology

Childrens Global Assessment Scale (CGAS)
Neurology

Brief Psychiatric Rating Scale
Psychiatric

Positive and Negative Syndrome Scale (PANSS)
Psychiatric

National Health and Nutrition Examination Survey (NHANES), Oral Glucose Tolerance Test (OGTT) Manual, 2007-2008
Diabetes

Definition of Flare in Patients with Established Gout
Bone and Joint

Center for International Blood and Marrow Transplant Research (CIBMTR),Form 2450 (R5.0) Post-Transplant Essential Data, 2021
SCD Curative Therapies

Clinical Evaluation of Language Fundamentals® (CELF®-5), Recalling sentences subtest
Speech, Language and Hearing

Rice Grammaticality Judgment Task
Speech, Language and Hearing

Rice/Wexler Test of Early Grammatical Impairment (TEGI)
Speech, Language and Hearing

National Health and Nutrition Examination Survey (NHANES), Muscle Strength Procedures Manual, 2013-2014
Physical Activity and Physical Fitness

Gross Motor Function Classification System Family Report Questionnaire (GMFCS)
Neurology

Gross Motor Function Classification System (GMFCS), Family Report Questionnaire
Neurology

Gross Motor Function Classification System (GMFCS), Family Report Questionnaire
Neurology

World Health Organization (WHO) & Centers for Disease Control and Prevention (CDC) growth charts
Rare Genetic Conditions

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Obesity

Edinburgh Handedness Inventory
Anthropometrics

Avon Longitudinal Study of Parents and Children Protocol (ALSPAC) & Edinburgh Handedness Inventory, 2004
Anthropometrics

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011
SCD Cardiovascular, Pulmonary, and Renal

Early Life Exposure Assessment Tool (ELEAT), 2015
Pregnancy

COVID-19 Community Response Survey
History, Treatment and Outcomes

Short Inflammatory Bowel Disease Questionnaire (SIBDQ)©, 1989
Gastrointestinal

Health Reform Monitoring Survey, 2015
Demographics

Short Assessment of Health Literacy-English (SAHL-E) and
Chew, L. D., et al. Brief questions to identify patients with inadequate health literacy. Fam Med, 2004
Individual Social Determinants of Health

Numeracy Understanding in Medicine Instrument (NUMi)
Individual Social Determinants of Health

EQ-5D-3L
SCD Neurology, Quality of Life, and Health Services

EuroQol Group - EQ-5D-Y
SCD Neurology, Quality of Life, and Health Services

Medical Expenditure Panel Survey (MEPS) Adult Self-Administered Questionnaire (SAQ)
Individual Social Determinants of Health

Multi-Ethnic Study of Atherosclerosis (MESA), Neighborhood Section, 2000
Social Environments

Digits in Noise Test (DIN)
Speech, Language and Hearing

Cardiovascular Health Study (CHS), Baseline Medical History Questionnaire & Framingham Heart Study (FHS)
Cardiovascular

Heaviness of Smoking Index (HSI)
Smoking Cessation, Harm Reduction and Biomarkers

National Health and Nutrition Examination Survey III (NHANES III), Body Measurements, 1988
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023
Anthropometrics

National Health and Nutritional Examination Survey (NHANES) Weight History Questionnaire, 2019-2020
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023
Anthropometrics

Association of Public Health Laboratories (APHL)
SCD Core: Tier 1

Hemophilia Joint Health Score (HJHS), 2.1
Hemophilia Inhibitor

Hemophilia Activities List (HAL)
Hemophilia Inhibitor

Pediatric Hemophilia Activities List (PedHAL)
Hemophilia Inhibitor

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedure Manual, 2007 & U.S. Food and Drug Administration (FDAs) approved laboratory assays, 2009
Infectious Diseases and Immunity

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2009
Infectious Diseases and Immunity

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Infectious Diseases and Immunity

Coronary Artery Risk Development in Young Adults (CARDIA), Y20 CARDIA VII, Pregnancy Questionnaire
Cardiovascular

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023
Anthropometrics

National Institutes of Health (NIH), Long Island Breast Cancer Study, 1996
Environmental Exposures

National Immunization Survey (NIS), 2013
Environmental Exposures

The Ohio State University Traumatic Brain Injury Identification Method Short Form (OSU TBI-ID)
Neurology

Black Womens Health Study (BWHS), 1995
Reproductive Health

Study for Future Families (SFF) & National Longitudinal Survey of Youth (NLSY)
Reproductive Health

Jackson Heart Study (JHS)
Neurology

Telen, M.J., et al. Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. TRANSFUSION, 2015
SCD Core: Tier 2

Finnish Environment and Asthma Study, 1997-2000
Environmental Exposures

The Hopelessness Scale for Children (HSC)
Suicide

The Beck Hopelessness Scale (BHS)
Suicide

Nurses Health Study II (NHS II), 2015
Reproductive Health

National Health and Nutrition Examination Survey (NHANES)
SCD Genitourinary

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research - Host: Social/Cognitive

Confusion, Hubbub, and Order Scale (CHAOS)
Pediatric Development

General Social Survey (GSS), Household Enumeration Form (HEF) Roster, 2014
Demographics

CDC Behavioral Risk Factor Surveillance System (BRFSS) Survey
Individual Social Determinants of Health

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Infectious Diseases and Immunity

Type 1 Diabetes Genetics Consortium (T1DGC), Manual Of Operations. Blood Collection and Processing, 2010
Infectious Diseases and Immunity

Behavioral Risk Factor Surveillance System (BRFSS), 2014
Reproductive Health

THromboprophylaxis In Sickle cell disease with central venous catheters (THIS-1)
SCD Pregnancy

Pricing Policies and Control of Tobacco in Europe (PPACTE) Study
Tobacco Regulatory Research: Vector

My Personal Health Record (MyPHR), Adult PHR Form, 2006
Infectious Diseases and Immunity

Williams, P. B., et al, Analytic precision and accuracy of commercial immunoassays for specific IgE: Establishing a standard, J ALLERGY CLIN IMMUN, 2000
Respiratory

The Columbia Impairment Scale (CIS)
SCD Neurology, Quality of Life, and Health Services

The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0)
SCD Neurology, Quality of Life, and Health Services

The CollaboRATE questionnaire
Early Psychosis Clinical Services

National Survey on Drug Use and Health (NSDUH), 2014
Early Psychosis Clinical Services

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
Hemophilia Inhibitor

Hemophilia Inhibitor

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
Hemophilia Inhibitor

Lee et al. Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001
Hemophilia Inhibitor

Adcock Funk et al., Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
Hemophilia Inhibitor

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
Hemophilia Inhibitor

Lee et al., Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001.
Hemophilia Inhibitor

Lee et al. Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001
Hemophilia Inhibitor

Information Seeking V2 from the Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post-Return of Results Follow-up #2 (5-7 months post-Return of Results)
Genomic Medicine Implementation

STOP-IT task
Substance Use-related Neurobehavioral and Cognitive Risk Factors

National Health and Nutrition Examination Survey (NHANES), 2007-2008, Drugs Use Questionnaire
Infectious Diseases and Immunity

The Insomnia Severity Index (ISI)
Suicide

The Presidents Challenge Adult Fitness Test, 2008 & Fitness Testing and Assessment Manual 4th ed. YMCA, 2000
Physical Activity and Physical Fitness

FITNESSGRAM®/ACTIVITYGRAM® Test Administration Manual, 2007
Physical Activity and Physical Fitness

Functional fitness test for community-residing older adults
Physical Activity and Physical Fitness

Wechsler Adult Intelligence Scale, 4th ed., (WAIS-IV)
SCD Neurology, Quality of Life, and Health Services

Wechsler Preschool and Primary Scale of Intelligence, 4th ed. (WPPSI-IV)
SCD Neurology, Quality of Life, and Health Services

Wechsler Intelligence Scale for Children, 5th ed., (WISC)
SCD Neurology, Quality of Life, and Health Services

Bayley Scales of Infant and Toddler Development (BSID)
SCD Neurology, Quality of Life, and Health Services

The Suicidal Ideation Questionnaire-Junior (SIQ-JR)
Suicide

The Scale for Suicide Ideation (SSI)
Suicide

Global Appraisal of Individual Needs-Short Screener (GAIN-SS)
Substance Abuse and Addiction Core: Tier 2

Centers for Disease Control and Prevention (CDC), GeoSentinel Questionnaire, 2008
Infectious Diseases and Immunity

Health Information National Trends Survey (HINTS)
Individual Social Determinants of Health

Social Interactions
Tobacco Regulatory Research: Environment

Diagnostic Infant and Preschool Assessment (DIPA)
Pediatric Development

The Intolerance of Uncertainty Scale (IUS)
Eating Disorders

University of Southern California, The Los Angeles Latino Eye Study (LALES), 2000-2003
Ocular

Health, Aging, and Body Composition Study (Health ABC), Weight History, Version 1.1a
Geriatrics

National Health Examination Survey (NHANES) Lab Procedures Manual, 2011-2012
Nutrition and Dietary Supplements

General Social Survey (GSS), 2018
Socioeconomic

Job Content Questionnaire (JCQ)
Social Environments

Knee injury and Osteoarthritis Outcome Score (KOOS)
Geriatrics

Multicenter Osteoarthritis Study (MOST) Baseline Telephone Screening Interview, Screening visit, 2003, Grant cycles 1 & 2.
Bone and Joint

Substance Abuse and Mental Health Services Administration (SAMHSA), drug cut-off concentrations for workplace testing
Assessment of Substance Use and Substance Use Disorders

Balloon Analogue Risk Task (BART)
Substance Use-related Neurobehavioral and Cognitive Risk Factors

Inventory of Callous-Unemotional Traits (ICU)
Psychiatric

Inventory of Callous-Unemotional Traits (ICU)
Psychiatric

Inventory of Callous-Unemotional Traits (ICU)
Psychiatric

Inventory of Callous-Unemotional Traits (ICU)
Psychiatric

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011
SCD Cardiovascular, Pulmonary, and Renal

Voigt, et al. Definitions for a common standard for 2D speckle tracking echocardiography: Consensus document of the EACVI/ASE/Industry Task Force to standardize deformation imaging. European Heart Journal - Cardiovascular Imaging, 16(1), 1-11.
SCD Curative Therapies

The Beck Lethality Scales
Suicide

Traumatic Life Events Questionnaire (TLEQ)
Social Environments

Adverse Life Events Scale
Social Environments

The Life Space Questionnaire
Geriatrics

Coronary Artery Risk Development in Young Adults (CARDIA), Y20 CARDIA VII & Framingham Heart Study (FHS), Generation 3
Cardiovascular

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory procedures manual, 2007
Gastrointestinal

American Nonsmokers Rights Foundation (ANRF) U.S. Tobacco Control Laws Database, 2023
Tobacco Regulatory Research: Environment

Online Survey on Recovery from COVID-19
Long COVID

Long COVID in Children and Young People (The CLoCk Study)
Long COVID

Sequelae in Adults at 6 Months After COVID-19 Infection
Long COVID

Global COVID-19 Clinical Platform: Case Report Form for Suspected Cases of Multisystem Inflammatory Syndrome (MIS) in Children and Adolescents Temporally Related to COVID-19
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Long COVID in Children and Young People (The CLoCk Study)
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Online Survey on Recovery from COVID-19
Long COVID

Johns Hopkins COVID Long Study
Long COVID

Roland-Morris Disability Questionnaire (RMDQ)
Bone and Joint

MacIntyre, N., et al. Standardization of the single-breath determination of carbon monoxide uptake in the lung. EUR RESPIR J, 2005
SCD Cardiovascular, Pulmonary, and Renal

Wanger, J. et al. Standardization of the measurement of lung volumes. EUR RESPIR J, 2005
SCD Cardiovascular, Pulmonary, and Renal

WHO Laboratory Manual for the Examination and Processing of Human Semen, Fifth Edition, 2010
Reproductive Health

Study For Future Families
Reproductive Health

Study for Future Families & International Index of Erectile Function (IIEF)
Reproductive Health

Baltimore Longitudinal Study on Aging (BLSA), Dental Examination
Oral Health

Silent Cerebral Infarct Multi-Center Clinical Trial (SIT), Demographic/Phenotypic Information
SCD Core: Tier 2

National Health and Nutrition Examination Survey (NHANES), Weight History Questionnaire, 2019-2020
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Weight History Questionnaire, 2019-2020
Anthropometrics

Population Assessment of Tobacco and Health (PATH) Study [United States] Public-Use Files, Wave 6: Adult Questionnaire (English Version)
Information Resources

COVID-19 Experiences (COVEX)
Information Resources

My Personal Health Record (MyPHR), Adult PHR Form, 2006
Infectious Diseases and Immunity

Multi-Ethnic Study of Arthrosclerosis (MESA), Medications, 2000
Diabetes

The California Teachers Study, Follow-Up Survey 4, 2005-2006
Cancer

Nurses Health Study (NHS), Black Womens Health Study (BWHS), Study of Women Across the Nation (SWAN)
Reproductive Health

Mental Health Statics Improvement Program (MHSIP), Youth Services Survey (YSS)
Early Psychosis Clinical Services

University of Michigan Metabolomics Biomedical Research Core Facility, Metabolomic studies protocol, v.130913
Obesity

Caraballo RS, et al. Quit Methods Used by US Adult Cigarette Smokers, 2014-2016. Prev Chronic Dis, 2017.
Smoking Cessation, Harm Reduction and Biomarkers

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023
Anthropometrics

American Migraine Study II, Self-Administered Questionnaire for Migraine
Neurology

The Pediatric Migraine Disability Assessment (PedMIDAS)
Neurology

The Million Veteran Program (MVP)
Post-traumatic Stress Psychopathology (including PTSD)

U.S. Department of Labor, State Minimum Wage Laws, 2022
Structural Social Determinants of Health

Pregnancy Risk Assessment Monitoring System (PRAMS), Phase 7
Pregnancy

Extremely Low Gestational Age Newborns (ELGAN) Chart Abstraction Form, 2002
Pregnancy

Pregnancy Risk Assessment Monitoring System (PRAMS), Phase 7
Pregnancy

A Randomized Trial of Induction Versus Expectant Management (ARRIVE), 2016
Pregnancy

Pregnancy Risk Assessment Monitoring System (PRAMS), 2023 and the Population Assessment of Tobacco and Health Wave 7 Adult Survey
Tobacco Regulatory Research - Host: Biobehavioral

The Reasons for Quitting (RFQ) Questionnaire
Tobacco Regulatory Research - Host: Social/Cognitive

Turner, L.R., et al. Motivation and reasons to quit: Predictive validity among adolescent smokers. AM J HEALTH BEHAV, 2004
Tobacco Regulatory Research - Host: Social/Cognitive

Drinking Motives Questionnaire Revised (DMQ-R)
Substance-specific Intermediate Phenotypes

Monitoring the Future (MTF), 2015
Substance-specific Intermediate Phenotypes

Brief Wisconsin Inventory of Smoking Dependence Motives (Brief WISDM)
Substance-specific Intermediate Phenotypes

Drinking Motives Questionnaire Revised (DMQ-R)
Substance-specific Intermediate Phenotypes

Immediate and Delayed Memory Task (IMT/DMT)
SCD Neurology, Quality of Life, and Health Services

Glasgow Antipsychotic Side-effect Scale (GASS)
Early Psychosis Clinical Services

The Phinney Scale
Tobacco Regulatory Research - Host: Social/Cognitive

Cardiovascular Health Study (CHS), Baseline Medical History Questionnaire & Womens Health Initiative (WHI), Medical History Update
Cardiovascular

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011
SCD Cardiovascular, Pulmonary, and Renal

National Youth Tobacco Survey (NYTS), 2022
Tobacco Regulatory Research: Environment

Project on Human Development in Chicago Neighborhoods (PHDCN), Community Survey, 1994-1995
Social Environments

U.S. Census Bureau, 1990 and 2000 Decennial Censuses (SF3); and American Community Survey (ACS), 5-year estimates, 2011-2015 to 2016-2020.
Social Environments

Mujahid, M. S., et al, Assessing the measurement properties of neighborhood scales: From psychometrics to ecometrics. AM J EPIDEMIOL, 2007
Social Environments

Microscale Audit of Pedestrian Streetscapes (MAPS-Mini)
Structural Social Determinants of Health

U.S. Census Bureau, Census 2020
Tobacco Regulatory Research: Environment

Finnegan Neonatal Abstinence Score Tool (FNAST) 2019 Final
Pediatric Development

Survey of Autonomic Symptoms (SAS)
Neurology

Charcot-Marie-Tooth Neuropathy Score
Neurology

Tobacco Laboratory, Nicotine (Total and Unprotonated), Version 03
Tobacco Regulatory Research: Agent

National Health and Nutrition Examination Survey (NHANES) Cotinine and Hydroxycotinine Analysis
Smoking Cessation, Harm Reduction and Biomarkers

Night Eating Questionnaire© (NEQ)
Obesity

National Institutes of Health Stroke Scale (NIHSS)
SCD Neurology, Quality of Life, and Health Services

Determination of NNAL in urine using liquid chromatography - tandem mass spectrometry (LC-MS/MS)
Tobacco Regulatory Research - Host: Biobehavioral

The Self-Injurious Thoughts and Behaviors Interview (SITBI)
Suicide

Ravens Progressive Matrices
Neurology

Health Professionals Follow-Up Study (HPFS), Infant Feeding Practices Study II (IFPS-II), Postnatal Month 12
Oral Health

National Health and Nutrition Examination Survey (NHANES), 2005-2006
Environmental Exposures

Individual Social Determinants of Health

National Eye Institute (NEI), Age-Related Eye Disease Study (AREDS), Phase II, Sunlight Exposure Questionnaire, 2/9/1996
Ocular

Childhood Cancer Survivor Study (CCSS)
SCD Genitourinary

Substance Abuse and Mental Health Services Administration (SAMHSA), drug cut-off concentrations, multidrug cup
Assessment of Substance Use and Substance Use Disorders

National Health and Nutrition Examination Survey (NHANES), Oral Glucose Tolerance Test (OGTT) Manual, 2007-2008
Diabetes

Baltimore Longitudinal Study on Aging (BLSA), Dental Examination
Oral Health

Robbins & Klee Test of Oral and Speech Motor Control
Speech, Language and Hearing

National Health Interview Survey (NHIS), Orofacial Pain, 1989
Oral Health

Organizational Readiness for Implementing Change (ORIC)
Genomic Medicine Implementation

Overactive Bladder Short Form Questionnaire (OAB-q SF)
SCD Genitourinary

University of Pennsylvania, Cancer Risk Evaluation Program, Health History Questionnaire, 9/2006
Cancer

Michigan Body Map (MBM)
Bone and Joint

Pain Catastrophizing Scale
SCD Pain

Pain Catastrophizing Scale - Child Version (PCS-C)
SCD Pain

Pain Catastrophizing Scale - Parent Version (PCS-P)
SCD Pain

Coping Strategies Questionnaire
SCD Pain

Pain Coping Questionnaire - Short Form
SCD Pain

Patient-Reported Outcomes Measurement Information System (PROMIS®) Numeric Rating Scale v.1.0 - Pain Intensity - 1a
SCD Pain

Faces Pain Scale-Revised (FPS-R)
SCD Pain

Revised Face, Legs, Activity, Cry, Consolability (FLACC) Pain Tool
SCD Pain

Patient-Reported Outcomes Measurement Information System (PROMIS®) Item Bank v1.1 - Pain Interference - Short Form 8a
SCD Pain

Patient-Reported Outcomes Measurement Information System (PROMIS®) Pediatric Item Bank v2.0 - Pain Interference - Short Form 8a
SCD Pain

Patient-Reported Outcome Measurement Information System (PROMIS®) Parent Proxy Item Bank v2.0 - Pain Interference - Short Form 8a
SCD Pain

Childhood Arthritis and Rheumatology Research Alliance (CARRA) Pain Chart
SCD Pain

Patient-Reported Outcomes Measurement Information System (PROMIS®) Pediatric Short Form v2.0 - Pain Quality - Affective 8a
SCD Pain

Patient-Reported Outcomes Measurement Information System (PROMIS®) Scale v2.0 - Neuropathic Pain Quality 5a
SCD Pain

Patient-Reported Outcomes Measurement Information System (PROMIS®) Scale v2.0 - Nociceptive Pain Quality 5a
SCD Pain

Patient-Reported Outcomes Measurement Information System (PROMIS®) Pediatric Short Form v2.0 - Pain Quality - Sensory 8a
SCD Pain

Alabama Parenting Questionnaire (APQ) Child Form
Pediatric Development

Alabama Parenting Questionnaire (APQ) Parent Form
Pediatric Development

National Heart, Lung, and Blood Institute (NHLBI), & Framingham Heart Study, 2011
Neurology

Movement Disorder Society United Parkinsons Disease Rating Scale (MDS-UPDRS)
Neurology

National Adult Tobacco Survey (NATS), 2009 and the Population Assessment of Tobacco and Health (PATH) Survey, 2023
Tobacco Regulatory Research: Agent

Molecular Epidemiology Case-Series Study of Non-Small Cell Lung Cancer in Smoking and Non-Smoking Women and Men
Cancer

Patient-Centered Communication in Cancer Care © (PCC-Ca) - 36 items (long form)
Cancer Outcomes and Survivorship

Genomics Outcome Scale (GOS)
Genomic Medicine Implementation

Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Cancer Care Survey, Version: Cancer surgery
Cancer Outcomes and Survivorship

Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Cancer Care Survey, Version: Drug Therapy
Cancer Outcomes and Survivorship

Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Cancer Care Survey, Version: Radiation Therapy
Cancer Outcomes and Survivorship

Patient Global Impression of Change (PGIC)
SCD Pain

Feelings About genomiC Testing Results (FACToR)
Genomic Medicine Implementation

Genetic Counseling Satisfaction Scale (GCSS)
Genomic Medicine Implementation

Monitoring the Future (MTF), 2015
Assessment of Substance Use and Substance Use Disorders

National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Assessment of Substance Use and Substance Use Disorders

Miller, M. R., et al, Standardization of spirometry. Series “ATS/ERS task force: Standardization of lung function testing.”, EUR RESPIR J, 2005
Respiratory

Pediatric National Institutes of Health Stroke Scale (PedNIHSS)
SCD Neurology, Quality of Life, and Health Services

Pediatric Hydroxyurea, Phase III Clinical Trial (BABY HUG), Part VII: Education - School Questionnaire
SCD Core: Tier 2

The PedsQL Sickle Cell Disease Module
SCD Neurology, Quality of Life, and Health Services

The International Tobacco Control Policy Evaluation Project (ITC). Youth and Young Adult Tobacco & Vaping Survey, Wave 7 Survey, August 2023
Tobacco Regulatory Research - Host: Social/Cognitive

PROMIS© Parent Proxy Item Bank v 2.0 - Peer Relationships
Pediatric Development

PROMIS Pediatric Item Bank v2.0 - Peer Relationships
Pediatric Development

Monitoring the Future (MTF), 2015
Substance Use-related Psychosocial Risk Factors

Monitoring the Future (MTF), 2015
Substance Use-related Community Factors

Implementing GeNomics In pracTicE (IGNITE) Pre-implementation Provider Survey
Genomic Medicine Implementation

Perceived Effectiveness of Cessation Advertisements study
Tobacco Regulatory Research: Environment

The National Survey on Drug Use and Health (NSDUH), 2009-2010
Substance Use-related Community Factors

Midlife in the United States II (MIDUS II)
Psychosocial

Perceived Stress Scale
Psychosocial

National Cancer Institute (NCI), Percentage energy from fat short instrument (PFat), 1996
Nutrition and Dietary Supplements

Current Population Survey, Labor Force Items
Structural Social Determinants of Health

Recovery Self-Assessment (RSA) - Administrator Version
Early Psychosis Clinical Services

Recovery Self-Assessment (RSA) - Family Member
Early Psychosis Clinical Services

Recovery Self-Assessment (RSA)
Early Psychosis Clinical Services

Recovery Self-Assessment (RSA) - Provider version
Early Psychosis Clinical Services

Population Assessment of Tobacco and Health (PATH) Study, PATH Wave 3 Adult Annotated Instrument, 2018
Smoking Cessation, Harm Reduction and Biomarkers

Population Assessment of Tobacco and Health (PATH) Study, PATH Waves 1 and 3 Adult Annotated Instrument, 2016-2018
Smoking Cessation, Harm Reduction and Biomarkers

Population Assessment of Tobacco and Health (PATH) Study, PATH Wave 1 Adult Annotated Instrument, 2016
Smoking Cessation, Harm Reduction and Biomarkers

Population Assessment of Tobacco and Health (PATH) Study, PATH Wave 1 Adult Annotated Instrument, 2016 
Smoking Cessation, Harm Reduction and Biomarkers

Population Assessment of Tobacco and Health (PATH) Study, PATH Waves 1 and 3 Adult Annotated Instrument, 2016-2018
Smoking Cessation, Harm Reduction and Biomarkers

The Accountable Health Communities (AHC) Health-Related Social Needs (HRSN) Screening Tool
Individual Social Determinants of Health

The Greene Climacteric Scale
SCD Genitourinary

Hispanic Community Health Study (HCHS), Oral Health Assessment
Oral Health

Womens Health Initiative (WHI), ACC/AHA Task Force on Practice Guidelines, & Hispanic Community Health Study (HCHS)
Cardiovascular

Lupus Family Registry and Repository (LFRR) Questionnaire, 2007
Infectious Diseases and Immunity

University of Southern California, Los Angeles Latino Eye Study (LALES), 2000-2003
Ocular

Age-Related Hearing Impairment (ARHI) Questionnaire
Speech, Language and Hearing

Collaborative Association Study of Psoriasis (CASP), Self Evaluation plus Medication Survey
Skin

American Thoracic Society-Division of Lung Diseases Questionnaire (ATS-DLD 78) & Genetic Epidemiology of COPD Study (COPDGene)
Respiratory

International Study of Asthma and Allergies in Childhood (ISAAC) Manual
Respiratory

Childrens Hospital Boston, Participant Contact Details and Medical Questionnaire, 2008
Ocular

Study of Use of Products and Exposure-Related Behavior (SUPERB) Study, Tier 1 Adult Questionnaire
Environmental Exposures

My Personal Health Record (MyPHR), Adult PHR Form, 2006
Infectious Diseases and Immunity

National Heart, Lung, and Blood Institute (NHLBI) and National Cancer Institute (NCI), Health Professionals Follow-Up Study, 2008
Gastrointestinal

Strong Heart Study, Phase IV-Family Study, Medical History Form
Diabetes

Multi-Ethnic Study of Arthrosclerosis (MESA), Exam 1, Medical History, 2001
Diabetes

My Personal Health Record (MyPHR), Child PHR Form, 2006
Infectious Diseases and Immunity

Prostate, Lung, Colorectal and Ovarian (PLCO), Cancer Screening Trial, Supplemental Questionnaire, 1/06
Cancer

International Wellbeing Group, Personal Wellbeing Index-Adult (PWI-A) (5th Ed.), 2013
Early Psychosis Clinical Services

Personal Wellbeing Index-School Children (PWI-SC)
Early Psychosis Clinical Services

The Big Five Inventory (BFI)
Psychiatric

Syllable Repetition Task (SRT)
Speech, Language and Hearing

Goldman-Fristoe Test of Articulation™, Third Edition (GFTA™-3)
Speech, Language and Hearing

International Physical Activity Questionnaire (IPAQ-7)
Early Psychosis Clinical Services

Physical Activity Neighborhood Environment Survey (PANES)
Individual Social Determinants of Health

Physical Activity Readiness Questionnaire for Everyone (PAR-Q+)
Physical Activity and Physical Fitness

PACE Questionnaire, 2001
Physical Activity and Physical Fitness

McAuley, E. The role of efficacy cognitions in the prediction of exercise behavior in middle-aged adults. BEHAV MED, 1992
Physical Activity and Physical Fitness

Short Physical Performance Battery
Physical Activity and Physical Fitness

National Health and Nutrition Examination Survey (NHANES), Sample Person Questionnaire: Physical Functioning Module, 2017-2018
Physical Activity and Physical Fitness

Patient-Reported Outcomes Measurement Information System® (PROMIS) Item Bank v2.1 - Mobility
SCD Pain

Patient-Reported Outcomes Measurement Information System® (PROMIS) Pediatric Item Bank v2.0 - Mobility - Short Form 8a
SCD Pain

Youth Acute Pain Functional Ability Questionnaire (YAPFAQ)
SCD Pain

Massachusetts Benchmark Study (MBS), 1999
Tobacco Regulatory Research: Agent

Federal Register Notice, Laboratory measurement, 74 Fed. Reg. 4, Jan. 7, 2009
Tobacco Regulatory Research: Agent

SF-36v2 Health Survey
Gastrointestinal

Program for Lung Cancer Screening and Tobacco Cessation (PLUTO), 2015-2020
Smoking Cessation, Harm Reduction and Biomarkers

Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017
Hemophilia Inhibitor

Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017
Hemophilia Inhibitor

Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017
Hemophilia Inhibitor

Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017
Hemophilia Inhibitor

Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017
Hemophilia Inhibitor

Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017
Hemophilia Inhibitor

Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017
Hemophilia Inhibitor

Iorio et al. Estimating and interpreting the pharmacokinetic profiles of individual patients with hemophilia A or B using a population pharmacokinetic approach: Communication from the SSC of the ISTH. J Thromb Haemost, 2017
Hemophilia Inhibitor

The Positive and Negative Perfectionism Scale (PNPS)
Eating Disorders

The Nurses Health Study II, 2005
Cancer

Sickle Cell Disease and Cardiovascular Risk—Red Cell Exchange Trial (SCD CARRE)
SCD Curative Therapies

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research - Host: Biobehavioral

Modified Cannon-Spoor Premorbid Adjustment Scale (PAS)
Early Psychosis Translational Research

The Edinburgh Postnatal Depression Scale© (EPDS)
Pregnancy

National Institute of Dental and Craniofacial Research (NIDCR), Archive of Procedures and Methods Used in Oral Health Surveys, Tooth Surface Index of Fluorosis (TSIF)
Oral Health

Priapism Impact Profile (PIP) Questionnaire
SCD Genitourinary

National Health and Nutrition Examination Survey (NHANES), Oral Health Questions, 2019-2020
Oral Health

Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) Checklist for Study or Intervention Planning
Genomic Medicine Implementation

Adjunctive Mood Management for Telephone-based Smoking Cessation in Primary Care, 2016-2019.
Smoking Cessation, Harm Reduction and Biomarkers

Prolonged Grief Disorder (PG-13-R)
SCD Psychosocial and Social Determinants of Health

Malinowski AK, et al. Prophylactic transfusion for pregnant women with sickle cell disease: a systematic review and meta-analysis. Blood. 2015

Oakley LL, et al. Serial prophylactic exchange blood transfusion in pregnant women with sickle cell disease (TAPS-2): study protocol for a randomised controlled feasibility trial. Trials. 2020

SCD Pregnancy

International Prostate Symptom Score (I-PSS)
Reproductive Health

Prothrombin Time (PT), CPT 85610
SCD Curative Therapies

European Alliance of Associations for Rheumatology (EULAR) Psoriatic Arthritis Impact of Disease: PsAID12 for Clinical Practice
Bone and Joint

Psoriasis Epidemiology Screening Tool (PEST)
Bone and Joint

Modified Colorado Symptom Index (CSI)
Early Psychosis Clinical Services

Brief Resilience Scale (BRS)
Geriatrics

The Child and Youth Resilience Measure (CYRM) Child Version
Pediatric Development

Triarchic Psychopathy Measure (TriPM)
Psychiatric

Questionnaire about the Process of Recovery (QPR)
Early Psychosis Clinical Services

Psychosocial Assessment of Candidates for Transplantation (PACT)
SCD Curative Therapies

The Primary Care-PTSD Screen (PC-PTSD-5)
Post-traumatic Stress Psychopathology (including PTSD)

The Primary Care-PTSD Screen (PC-PTSD-IV)
Post-traumatic Stress Psychopathology (including PTSD)

University of California, Los Angeles, Post-traumatic Stress Disorder Reaction Index (UCLA PTSD Index), DSM-4
Psychiatric

University of California, Los Angeles, Post-traumatic Stress Disorder Reaction Index (UCLA PTSD Index), DSM-5
Psychiatric

PTSD Checklist for DMS-5 (PCL-5)
Psychiatric

PTSD Checklist for DSM-4
Psychiatric

The Clinician-Administered PTSD Scale (CAPS-5) for The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5)
Post-traumatic Stress Psychopathology (including PTSD)

The Clinician-Administered PTSD Scale (CAPS-IV) for The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV)
Post-traumatic Stress Psychopathology (including PTSD)

Womens Health Initiative (WHI) & Cardiovascular Health Study (CHS)
Cardiovascular

AARC Clinical Practice Guideline: Exercise Testing for Evaluation of Hypoxemia and/or Desaturation: revision & update. Resp Care, 2001
Respiratory

World Health Organization (WHO), Pulse oximetry training manual, 2011
Respiratory

The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), Quality of Care Module
SCD Neurology, Quality of Life, and Health Services

Consumer Assessment of Healthcare Providers and Systems (CAHPS), Health Plan Survey 4.0, Child Medicaid Questionnaire
SCD Neurology, Quality of Life, and Health Services

Patient-Reported Outcomes Measurement Information System® (PROMIS) 29 Profile, v. 2.0 Adult Profile
Rare Genetic Conditions

Patient-Reported Outcomes Measurement Information System® (PROMIS) Item Bank, v.1.1, Pediatric Profile 25
Rare Genetic Conditions

St. Georges Respiratory Questionnaire (SGRQ)
Respiratory

Quality of Life Enjoyment and Satisfaction Questionnaire - Short Form (Q-LES-Q-SF)
Psychosocial

Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire (PQ-LES-Q)
Psychosocial

Quality of Life in Cancer Patients European Organisation for the Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire - Core 30 (QLQ-C30)
Cancer Outcomes and Survivorship

Quality of Life Patient/Cancer Survivor Version (QOL-CSV)
Cancer Outcomes and Survivorship

Home Observation for Measurement of the Environment (HOME)-revised edition National Longitudinal Study of Youth Children & Young Adults
Pediatric Development

The Questionnaire of Eating and Weight Patterns-5 (QEWP-5)©
Eating Disorders

The Questionnaire on Eating and Weight Patterns (QEWP-C-5)
Eating Disorders

American Community Survey (ACS), 5-year estimates
Social Environments

American Community Survey (ACS), 5-year estimates
Social Environments

U.S. Census Bureau, Census, 1990, 2000, 2010
Social Environments

The General Ethnic Discrimination (GED) Scale
Individual Social Determinants of Health

Reactions to Loss Scale (RTL)
SCD Psychosocial and Social Determinants of Health

Woodcock-Johnson® Tests of Achievement (WJ IV®)
Speech, Language and Hearing

The Recovery and Recurrence Questionnaire (RRQ)
SCD Neurology, Quality of Life, and Health Services

Center for International Blood and Marrow Transplant (CIBMTR), Form 2030 (R3.0) Sickle Cell Pre-HSCT Data, 2021
SCD Curative Therapies

University of Southern California, Los Angeles Latino Eye Study (LALES), 2000-2003
Ocular

The Multi-Ethnic Pediatric Eye Disease Study (MEPEDS), 2002-2008 & Baltimore Pediatric Eye Disease Study (BPEDS), 2003-2007
Ocular

Decision Regret Scale
Genomic Medicine Implementation

Relational and Item-Specific Encoding Task (RiSE)
Early Psychosis Translational Research

Implementing GeNomics In pracTicE (IGNITE) Pre-implementation Provider Survey
Genomic Medicine Implementation

Brief Multidimensional Measure of Religiousness/Spirituality (BMMRS)
SCD Psychosocial and Social Determinants of Health

National Survey of Family Growth (NSFG), 2011-2013
Reproductive Health

Womens Interview Study of Health & Pregnancy Risk Assessment Monitoring System (PRAMS), 2009
Reproductive Health

The Longitudinal Investigation of Fertility & the Environment (LIFE) Study, 2005
Reproductive Health

Index of Concentration at the Extremes (ICE)
Structural Social Determinants of Health

Parkinsons Disease, Environment, and Genes Study (PEG Study), 2001
Environmental Exposures

Connor-Davidson Resilience Scale (CD-RISC 25)
SCD Psychosocial and Social Determinants of Health

Potter, P. A., et al. Fundamentals of Nursing, 1985
Respiratory

Wallis, L. A., Healy, et al, Age related reference ranges for respiration rate and heart rate from 4 to 16 years, ARCH DIS CHILD, 2005
Respiratory

Fleming, S, et al. Normal ranges of heart rate and respiratory rate in children from birth to 18 years of age: A systemic review of observational studies. Lancer, 2011
Respiratory

Go/NoGo task
Substance Use-related Neurobehavioral and Cognitive Risk Factors

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011
SCD Cardiovascular, Pulmonary, and Renal

National Heart, Lung and Blood Institute (NHLBI), Multi-Ethnic Study of Atherosclerosis (MESA), 2000-2008
Ocular

Health Examination Survey (HES)
Cardiovascular

Clinical Disease Activity Index (CDAI)
Bone and Joint

Mullen Scales of Early Learning
Rare Genetic Conditions

Work Productivity and Activity Impairment Questionnaire (WPAI), General Health (WPAI:GH), V2.0
Hemophilia Inhibitor

National Survey of Childrens Health (NSCH), 2016
Hemophilia Inhibitor

Substance Abuse and Mental Health Services Administration (SAMHSA), Communities That Care (CTC) & Seattle Social Development Project (SSDP) longitudinal study
Substance Use-related Psychosocial Risk Factors

Aullig, K., et al. School climate: Historical review, instrument development, and school assessment. J. Psychoeduc. Assess, 2010
Social Environments

Adams forward bend test & x-ray with Cobb technique
Rare Genetic Conditions

Pediatric Outcomes Data Collection Instrument (PODCI), v. 2.0,Parent/Child Outcomes Instrument, 2005
Rare Genetic Conditions

Treatment Improvement Protocol (TIP) Services, Simple Screening Instrument for Alcohol and Other Drugs (SSI-AOD)
SCD Neurology, Quality of Life, and Health Services

Brief Michigan Alcoholism Screening Test (Brief MAST)
SCD Neurology, Quality of Life, and Health Services

Alcohol Use Disorders Identification Test (AUDIT)
SCD Neurology, Quality of Life, and Health Services

Drug Abuse Screening Test (DAST-10)
SCD Neurology, Quality of Life, and Health Services

National Center for Environmental Health (NCEH), Laboratory Procedure Manual, 2004
Nutrition and Dietary Supplements

Smoking Self-Efficacy Questionnaire (SEQ-12)
Smoking Cessation, Harm Reduction and Biomarkers

The Sickle Cell Disease Self-Efficacy Scale (SCSES)
SCD Neurology, Quality of Life, and Health Services

The Rosenberg Self-Esteem Scale
Psychosocial

Global Appraisal of Individual Needs (GAIN), Self-Help Involvement Scale (SHIS)
Substance Use-related Co-morbidities and Health-related Outcomes

National HIV Behavioral Surveillance System (NHBS), 2010
Substance Abuse and Addiction Core: Tier 1

National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Tobacco Regulatory Research Core: Tier 2

Alcohol Urge Questionnaire (AUQ)
Tobacco Regulatory Research Core: Tier 2

Cocaine Craving Questionnaire-Brief (CCQ-Brief)
Tobacco Regulatory Research Core: Tier 2

Heroin Craving Questionnaire - Short Form 14 (HCQ-SF-14)
Tobacco Regulatory Research Core: Tier 2

Marijuana Craving Questionnaire - Short Form (MCQ-SF)
Tobacco Regulatory Research Core: Tier 2

Brief Questionnaire of Smoking Urges (QSU-Brief)
Tobacco Regulatory Research Core: Tier 2

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview and Final Youth Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview and Final Youth Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH), Adult Extended Questionnaire, Version 7.5 & International Tobacco Control 4-Country Survey, 2011
Tobacco Regulatory Research: Vector

Global Adult Tobacco Survey (GATS), Core Questionnaire with Optional Questions, 2020
Tobacco Regulatory Research: Vector

National Health Interview Survey (NHIS), Family - Family Identification, 2014
Tobacco Regulatory Research Core: Tier 2

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Sensitivity to Punishment/Sensitivity to Reward Questionnaire (SPSRQ)
Substance Use-related Psychosocial Risk Factors

Behavioral Inhibition System (BIS)/Behavioral Activation System (BAS) scale
Substance Use-related Psychosocial Risk Factors

Behavioral Inhibition System (BIS)/Behavioral Activation System (BAS) scale - child version
Substance Use-related Psychosocial Risk Factors

American Congress of Obstetricians and Gynecologists (ACOG), Antenatal Record Forms B and C
Anthropometrics

American Congress of Obstetricians and Gynecologists (ACOG), Antenatal Record Forms B and C
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007
Diabetes

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2009-2010
SCD Cardiovascular, Pulmonary, and Renal

Global Appraisal of Individual Needs (GAIN)
SCD Neurology, Quality of Life, and Health Services

All of Us Research Program, Participant Provided Information (PPI), 2018
Demographics

PROMIS® v2.0 Brief Profile Sexual Function and Satisfaction (Female)
SCD Genitourinary

PROMIS® v2.0 Brief Profile Sexual Function and Satisfaction (Male)
SCD Genitourinary

All of Us Research Program, Participant Provided Information (PPI), 2018
Demographics

National Health and Nutrition Examination Survey (NHANES), Sexual Behavior Module, 2015-2016
Reproductive Health

National Health and Nutrition Examination Survey (NHANES), Sexual Behavior Module, 2015-2016
Reproductive Health

CollaboRATE

Early Psychosis Clinical Services

Family Communication from the Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post-Return of Results Follow-up #2 (5-7 months post-Return of Results) & Electronic Medical Records and Genomics (eMERGE) Family Communication of Genetic Results
Genomic Medicine Implementation

Sickle Cell Disease Health-Related Stigma Scale Short Form (SCD-HRSS-SF)
SCD Psychosocial and Social Determinants of Health

Measure of Sickle Cell Stigma (MoSCS)
SCD Psychosocial and Social Determinants of Health

Child Stigma Scale (CSS)
SCD Psychosocial and Social Determinants of Health

Sharma et al. Acute vaso-occlusive pain is temporally associated with the onset of menstruation in women with sickle cell disease. J Women’s Health (Larchmt), 2019. Demographic survey.
SCD Genitourinary

Modified version of the Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y)
SCD Genitourinary

Sickle Cell Pain Diary
SCD Pain

Responses to Stress Questionnaire - Sickle Cell Disease version (RSQ-SC), Parent Report version
SCD Psychosocial and Social Determinants of Health

Responses to Stress Questionnaire - Sickle Cell Disease version (RSQ-SC)
SCD Psychosocial and Social Determinants of Health

Adolescent and Caregiver Sickle Cell Disease Self-Management Skills Checklist - Self-Management Skills Checklist for Teens
SCD Psychosocial and Social Determinants of Health

Adolescent and Caregiver Sickle Cell Disease Self-Management Skills Checklist - Self-Management Skills Checklist for Caregivers
SCD Psychosocial and Social Determinants of Health

Cure Sickle Cell Initiative (CureSCi) Drug Product Case Report Form and Center for International Blood and Marrow Transplant Research (CIBMTR) Form 2400 (R8.0) Pre-Transplant Essential Data, 2021
SCD Curative Therapies

Sickle Cell Transition Intervention Program - Readiness for Transition (TIP-RFT)
SCD Psychosocial and Social Determinants of Health

Cure Sickle Cell Initiative (CureSCi) Transplant Conditioning Case Report Form (CRF)
SCD Curative Therapies

Sickle Cell Pain Burden Interview (SCPBI)
SCD Pain

Washington Heights-Inwood Genetic Study of Essential Tremor (WHIGET) Tremor Rating Scale
Neurology

Adolescent Sedentary Activity Questionnaire (ASAQ)
Physical Activity and Physical Fitness

Marshall, A. Leat al, Measuring total and domain-specific sitting: A study of reliability and validity, MED SCI SPORT EXER, 2010
Physical Activity and Physical Fitness

Quereux, G., et al. Creation and test of a questionnaire for self-assessment of melanoma risk factors. EUR J CANCER PREV, 2010
Skin

Berlin Questionnaire
Respiratory

The Pediatric Sleep Questionnaire (PSQ), Version 070424
Respiratory

National Institute of Mental Health (NIMH), Sleep Patterns and Problems
Psychiatric

The Sleep Disturbance Scale for Children (SDSC)
Psychiatric

National Health and Nutrition Examination Survey (NHANES), Modified Pocket Smell Test (M-PST), 2013
Geriatrics

Prostate, Lung, Colorectal and Ovarian (PLCO), Cancer Screening Trial, Supplemental Questionnaire, 1/06
Cancer

Cornblatt, B.A., et al. Preliminary findings for two new measures of social and role functioning in the prodromal phase of schizophrenia. Schizophr. Bull., 2007
Early Psychosis Clinical Services

The Position Generator
Psychosocial

UCLA Loneliness Scale
Psychosocial

Indianapolis Network Mental Health Study (INMHS), 1990-1991
Social Environments

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7
Tobacco Regulatory Research: Environment

Population Assessment of Tobacco and Health (PATH) Study, Wave 7, Youth Survey
Tobacco Regulatory Research: Environment

The Medical Outcomes Study (MOS) Social Support Survey
Post-traumatic Stress Psychopathology (including PTSD)

Partner Interaction Questionnaire (PIQ-20)
Smoking Cessation, Harm Reduction and Biomarkers

Social Vulnerability Index (SVI)
Structural Social Determinants of Health

Pan American Health Organization (PAHO), Regional Expert Group for Cardiovascular Disease Prevention through Population-wide Dietary Salt Reduction, (2010)
Nutrition and Dietary Supplements

Wechsler Adult Intelligence Scale®, Block Design Test, Fourth Edition (WAIS®-IV)
Neurology

Framingham Osteoporosis Study, Generation 3, Musculoskeletal Exam
Bone and Joint

World Health Organization’s Quality of Life Measure (WHOQOL) Spirituality, Religion and Personal Beliefs (SRPB)
Individual Social Determinants of Health

Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being (FACIT©-Sp-12 (Version 4))
Cancer Outcomes and Survivorship

Miller, M. R., et al, Standardization of spirometry. Series “ATS/ERS task force: Standardization of lung function testing.”, EUR RESPIR J, 2005
Respiratory

Beydon, N., et al, An official American Thoracic Society/European Respiratory Society statement: Pulmonary function testing in preschool children, AM J RESP CRIT CARE, 2007
Respiratory

Standardized Tobacco Assessment for Retail Settings (STARS), Version 1.0
Tobacco Regulatory Research: Vector

Standardized Tobacco Assessment for Retail Settings - Flavored Tobacco (fSTARS) Version 2.0
Tobacco Regulatory Research: Vector

State Tobacco Activities Tracking and Evaluation (STATE) System
Tobacco Regulatory Research: Environment

The Stroke Impact Scale (SIS)
SCD Neurology, Quality of Life, and Health Services

Stoke Prevention in Sickle Cell Disease (STOP) Study, Transcranial Doppler (TCD) ultrasonography
SCD Neurology, Quality of Life, and Health Services

Imaging Transcranial Doppler (TCDi) ultrasonography
SCD Neurology, Quality of Life, and Health Services

The Stuttering Severity Instrument-Fourth Edition (SSI-4)
Speech, Language and Hearing

National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Assessment of Substance Use and Substance Use Disorders

National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Behaviors and Risks

National Epidemiologic Survey on Alcohol and Related Conditions (NESARC-WAVE 1), AUDADIS-IV
Assessment of Substance Use and Substance Use Disorders

National Committee for Quality Assurance (NCQA) Quality Compass Tool
Substance Use-related Community Factors

National Survey on Drug Use and Health (NSDUH), 2015
Alcohol, Tobacco and Other Substances

National Survey on Drug Use and Health (NSDUH), 2015
Alcohol, Tobacco and Other Substances

National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Alcohol, Tobacco and Other Substances

National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Alcohol, Tobacco and Other Substances

Atherosclerosis Risk in Communities (ARIC), Physician Questionnaire & Multi-Ethnic Study of Atherosclerosis (MESA), Mortality Review Form
Cardiovascular

National Cancer Institute (NCI) Five-Factor Screener, 2005
Nutrition and Dietary Supplements

The Suicide Intent Scale (SIS)
Suicide

Supportive Care Needs Survey -Short Form 34 (SCNS-SF34)
Cancer Outcomes and Survivorship

Population Assessment of Tobacco and Health (PATH) Study: Final Youth Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research - Host: Social/Cognitive

The Conners Continuous Performance Test 3 (CPT 3™)
SCD Neurology, Quality of Life, and Health Services

LeGrys, V.A., et al. Diagnostic sweat testing: The Cystic Fibrosis Foundation guidelines. J Pediatr, 2007
Rare Genetic Conditions

Symptoms of Autism Spectrum Disorders - Adolescent
Psychiatric

The Autism Spectrum Quotient - Adult Version
Psychiatric

The Childhood Autism Spectrum Test (CAST)
Psychiatric

The Restless Legs Syndrome Rating Scale
Neurology

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Infectious Diseases and Immunity

Damage Index for Systemic Lupus Erythematosus Arthritis
Bone and Joint

Early Adolescent Temperament Questionnaire (EATQ-R)
Psychosocial

Adult Temperament Questionnaire (ATQ)
Psychosocial

Childrens Behavior Questionnaire-Very Short Form (CBQ-VSF)
Psychosocial

Early Childhood Behavior Questionnaire (ECBQ)
Psychosocial

Infant Behavior Questionnaire-Revised (IBQ-R)
Psychosocial

Temperament and Character Inventory (TCI), Harm subscale
Eating Disorders

Melmed, S., et al. Williams textbook of endocrinology, 2008
Reproductive Health

National Health and Nutrition Examination Survey (NHANES) 2011-2012, Total Testosterone
SCD Genitourinary

Three-Dimensional (3D) Magnetization-Prepared RApid Gradient Echo (MP-RAGE)
Early Psychosis Translational Research

Prophylactic Anticoagulation and central Venous access device-related thromboembolism In adult Sickle cell patients (PAVIS)
SCD Pregnancy

Prophylactic Anticoagulation and central Venous access device-related thromboembolism In adult Sickle cell patients (PAVIS)
SCD Pregnancy

Cure Sickle Cell Initiative (CureSCi), F2909 Medical History Core Form, SCD Version 1.0
SCD Pregnancy

Thyroid Stimulating Hormone (TSH), CPT 84443
SCD Curative Therapies

Tinnitus Handicap Inventory
Speech, Language and Hearing

Tinnitus Screener
Speech, Language and Hearing

National Epidemiologic Survey on Alcohol and Related Conditions (NESARC), Wave 1
Oral Health

National Survey on Drug Use and Health (NSDUH), 2014
Alcohol, Tobacco and Other Substances

Tobacco Use Supplement to the Current Population Survey (TUS-CPS), 2010
Alcohol, Tobacco and Other Substances

National Survey on Drug Use and Health (NSDUH), 2008
Alcohol, Tobacco and Other Substances

National Survey on Drug Use and Health (NSDUH), 2015
Alcohol, Tobacco and Other Substances

Tobacco Use Supplement to the Current Population Survey (TUS-CPS), 2006
Alcohol, Tobacco and Other Substances

National Survey on Drug Use and Health (NSDUH), 2021
Tobacco Regulatory Research: Agent

Current Population Survey (CPS), Tobacco Supplement, 2018-2019
Tobacco Regulatory Research: Agent

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Agent

Duncan, D., et al. Examination of How Neighborhood Definition Influences Measurements of Youths Access to Tobacco Retailers: A Methodological Note on Spatial Misclassification, Am J Epidemiol, 2014
Tobacco Regulatory Research: Vector

Young-Wolff, K., et al. Tobacco Retailer Proximity and Density and Nicotine Dependence Among Smokers with Serious Mental Illness, Am J Public Health, 2014
Tobacco Regulatory Research: Vector

Luke, D., et al. Family Smoking Prevention and Tobacco Control Act: Banning Outdoor Tobacco Advertising Near Schools and Playgrounds, Am J Prev Med, 2011
Tobacco Regulatory Research: Vector

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022) & International Tobacco Control 4-Country Survey, 2015
Tobacco Regulatory Research: Agent

National Health Interview Survey (NHIS), Orofacial Pain, 1989
Oral Health

The Toronto Alexithymia Scale (TAS-20)
Eating Disorders

Three-Day Physical Activity Recall (3 Day PAR)
Physical Activity and Physical Fitness

Seven-Day Physical Activity Recall (7 Day PAR)
Physical Activity and Physical Fitness

CHAMPS Activities Questionnaire for Older Adults
Physical Activity and Physical Fitness

Stanford Brief Activity Survey
Physical Activity and Physical Fitness

The Health, Aging and Body Composition (Health ABC) Study, 2009
Physical Activity and Physical Fitness

American Congress of Obstetricians and Gynecologists (ACOG), Antenatal Record Forms B and C, 2014
Anthropometrics

Pregnancy Risk Assessment Monitoring System (PRAMS), Phase 5
Anthropometrics

American Congress of Obstetricians and Gynecologists (ACOG), Antenatal Record Forms B and C, 2014
Anthropometrics

Silent Cerebral Infarct Transfusion (SIT) Trial, S31r4 Transfusion Form
SCD Pregnancy

The Sickle Cell Disease and Cardiovascular Risk—Red Cell Exchange Trial (SCD CARRE)
SCD Curative Therapies

Silent Cerebral Infarct Transfusion (SIT) Trial, S32r0 Transfusion Reaction Form
SCD Pregnancy

The Life Events Checklist (LEC-5)
Post-traumatic Stress Psychopathology (including PTSD)

Deployment Risk and Resilience Inventory-2 (DRRI-2): Difficult Living and Working Environment
Post-traumatic Stress Psychopathology (including PTSD)

Treatment Episode Data Set - Admissions (TEDS-A)
Behaviors and Risks

Trust in Medical Researchers - Long Form - Adult
SCD Psychosocial and Social Determinants of Health

Trust in Medical Researchers - Short Form - Adult
SCD Psychosocial and Social Determinants of Health

Wake Forest Trust in the Medical Professional
SCD Psychosocial and Social Determinants of Health

National Cancer Institute (NCI), Non-Hodgkins Lymphoma Study (NHL), Sun Exposures Module, 2001
Environmental Exposures

KnowGene
Genomic Medicine Implementation

National Epidemiologic Survey on Alcohol and Related Conditions-III (NESARC-III)
Substance Use-related Community Factors

Survivor Unmet Needs Survey (SF- SUNS)
Cancer Outcomes and Survivorship

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007
Diabetes

Health, Aging, and Body Composition Study (Health ABC), Urinary History
Geriatrics

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007
Diabetes

Population Assessment of Tobacco and Health (PATH) Study: Final Adult Interview, Wave 7 (January 2022 - December 2022)
Tobacco Regulatory Research: Vector

Growing Up Today Study, 2007
Obesity

Centre for Vision Research, Blue Mountains Eye Study- 3 (BMES-3), 2002-2004
Ocular

The Centre for Vision Research, Sydney Myopia Study, 2005
Ocular

HERO Registry Protective Equipment Survey
Behaviors and Risks

Population Assessment of Tobacco and Health (PATH) Study, Wave 7 Adult Survey Instrument
Behaviors and Risks

Wechsler Memory Scale®, Logical Memory subtest, Fourth Edition (WMS®-IV)
Neurology

Childrens Memory Scale® (CMS), Verbal Memory subscales
Neurology

Vertebral Fracture: Lateral Spine DXA or X-ray
Bone and Joint

Dizziness Handicap Inventory (DHI)
Speech, Language and Hearing

Million Veteran Program (MVP), Lifestyle Survey
Tobacco Regulatory Research Core: Tier 2

Global Appraisal of Individual Needs (GAIN), General Victimization Scale (GVS)
Substance Use-related Co-morbidities and Health-related Outcomes

National Eye Institute (NEI), Early Treatment Diabetic Retinopathy Study (ETDRS), 1979-1989
Ocular

Vision Function Questionnaire (VFQ-25)
Ocular

Wechsler Memory Scale®, Visual Reproductions subtest, Fourth Edition (WMS®-IV)
Neurology

Childrens Memory Scale® (CMS), Visual Memory subtest
Neurology

Vitamin D External Quality Assessment Scheme (DEQAS)
Nutrition and Dietary Supplements

The Peabody Picture Vocabulary Test-Fourth Edition (PPVT™-4)
Speech, Language and Hearing

Voice Handicap Index (VHI), 1997
Speech, Language and Hearing

The Aging Voice Index (AVI)
Speech, Language and Hearing

COVID-19 Experiences (COVEX)
History, Treatment and Outcomes

Framingham Heart Study - Offspring Cohort, Exam 5, 1994
Anthropometrics

Irish Universities Nutrition Alliance (lUNA), National Childrens Food Survey, 2003
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023
Anthropometrics

Omron® HJ-112 Instruction Manual
Physical Activity and Physical Fitness

American Housing Survey (AHS), 2019
Structural Social Determinants of Health

The Iowa Study of Environment and Health; National Health and Nutrition Examination Survey, 2005-2006
Environmental Exposures

Panel Study of Income Dynamics (PSID), wealth supplement, 2019
Socioeconomic

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2021-2023
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2019-2020
Anthropometrics

Youth Risk Behavior Survey (YRBS), 2015
Obesity

National Health and Nutrition Examination Survey (NHANES), Weight History Questionnaire, 2019-2020
Anthropometrics

Center for International Blood and Marrow Transplant Research (CIBMTR), Form 2450 (R5.0) Post-Transplant Essential Data, 2020
SCD Curative Therapies

The Minnesota Withdrawal Scale - Revised (MWS-R)
Tobacco Regulatory Research - Host: Biobehavioral

The Test of Word Reading Efficiency-Second Edition (TOWRE-2)
Speech, Language and Hearing

Wechsler Adult Intelligence Scale®, Digit Span subtest, Fourth Edition (WAIS®-IV)
Neurology

Childrens Memory Scale® (CMS), Attention and Concentration subtests
Neurology

Nebraska Worksite Wellness Survey, 2016
Tobacco Regulatory Research: Environment

The Yale-Brown-Cornell Eating Disorder Scale (YBC-EDS)
Mental Health Research

National Health Interview Survey (NHIS), Family Questionnaire, 2007
Demographics

Monitoring the Future (MTF), 2022
Tobacco Regulatory Research: Environment