Protocol - Autoimmune Diseases Related to Type I Diabetes

Description

The interviewer asks the respondents whether they (or their child) had certain autoimmune diseases. The study participants are handed a cue card to help them identify the autoimmune diseases that they or their child may have had.

Specific Instructions

The Expert Review Panel recommends that the list of diseases in Item 1 should also include autoimmune hepatitis, Guillain-Barré syndrome, and Sjögren’s syndrome

Availability

Available

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Protocol

1. Do you (Does your child) have any of the following diseases?

HAND PARTICIPANT CUE CARD AND MARK ALL REPORTED RESPONSES.

[ ] a 1 Multiple sclerosis

[ ] b 1 Celiac disease

[ ] c 1 Thyroid disease

[ ] d 1 Myasthenia gravis

[ ] e 1 Pernicious anemia

[ ] f 1 Lupus or SLE

[ ] g 1 Rheumatoid arthritis

[ ] h 1 Inflammatory Bowel Disease

[ ] I 1 Vitiligo

[ ] j 1 Addisons Disease

[ ] k 1 Psoriasis

[ ] L 8 None of the above

[ ] m 9 Don’t know

Personnel and Training Required

The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a "don’t know" response is provided.

Equipment Needs

These questions can be administered in a computerized or non-computerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.

Requirements

Requirement Category	Required
Major equipment	No
Specialized training	No
Specialized requirements for biospecimen collection	No
Average time of greater than 15 minutes in an unaffected individual	No

Mode of Administration

Interviewer-administered questionnaire

Lifestage

Child, Adolescent, Adult, Senior

Participants

Adult aged 18 or older. The protocol can also be administered to a child through an adult proxy.

Selection Rationale

This questionnaire from the Type 1 Diabetes Genetics Consortium (T1DGC) was vetted against similar protocols and selected because it is a validated instrument that is low burden to respondents and investigators.

Language

Chinese, English, Other languages available at source

Standards

Standard	Name	ID	Source
Logical Observation Identifiers Names and Codes (LOINC)	Autoimmune dis type 1 diabetes proto	62789-3	LOINC
Human Phenotype Ontology	Diabetes Mellitus	HP:0000819	HPO
caDSR Form	PhenX PX140101 - Autoimmune Diseases Related To Type 1 Diabetes	6255926	caDSR Form

Derived Variables

None

Process and Review

The Expert Review Panel #1 reviewed the measures in the Anthropometrics, Diabetes, Physical Activity and Physical Fitness, and Nutrition and Dietary Supplements domains.

Guidance from the ERP includes:

• Revised descriptions of measure

Back-compatible: no changes to Data Dictionary

Previous version in Toolkit archive (link)

Protocol Name from Source

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

Source

US Department of Health and Human Services. National Institutes of Health. National Institute of Diabetes, Digestive and Kidney Diseases. National Institute of Diabetes. Type 1 Diabetes Genetic Consortium. 2004. Affected Sib-Pair Exam Form. Question number 8 (question 1).

General References

American Diabetes Association. (2014). Diagnosis and classification of diabetes mellitus. Diabetes Care, 37(Supplement 1), S81 - S90.

Protocol ID

140101

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX140101_Autoimmune_Diseases_Addisons_Disease
	PX140101011000	Do you (Does your child) have any of the more following diseases? Addisons disease show less	N/A
PX140101_Autoimmune_Diseases_Celiac_Disease
	PX140101010200	Do you (Does your child) have any of the more following diseases? Celiac disease show less	Variable Mapping
PX140101_Autoimmune_Diseases_Dont_Know
	PX140101011300	Do you (Does your child) have any of the more following diseases? Don't know show less	N/A
PX140101_Autoimmune_Diseases_Inflammatory_Bowel_Disease
	PX140101010800	Do you (Does your child) have any of the more following diseases? Inflammatory bowel disease show less	Variable Mapping
PX140101_Autoimmune_Diseases_Lupus_Or_SLE
	PX140101010600	Do you (Does your child) have any of the more following diseases? Lupus or SLE show less	Variable Mapping
PX140101_Autoimmune_Diseases_Multiple_Sclerosis
	PX140101010100	Do you (Does your child) have any of the more following diseases? Multiple sclerosis show less	Variable Mapping
PX140101_Autoimmune_Diseases_Myasthenia_Gravis
	PX140101010400	Do you (Does your child) have any of the more following diseases? Myasthenia gravis show less	Variable Mapping
PX140101_Autoimmune_Diseases_None
	PX140101011200	Do you (Does your child) have any of the more following diseases? None of the above show less	N/A
PX140101_Autoimmune_Diseases_Pernicious_Anemia
	PX140101010500	Do you (Does your child) have any of the more following diseases? Pernicious anemia show less	Variable Mapping
PX140101_Autoimmune_Diseases_Psoriasis
	PX140101011100	Do you (Does your child) have any of the more following diseases? Psoriasis show less	Variable Mapping
PX140101_Autoimmune_Diseases_Rheumatoid_Arthritis
	PX140101010700	Do you (Does your child) have any of the more following diseases? Rheumatoid arthritis show less	Variable Mapping
PX140101_Autoimmune_Diseases_Thyroid_Disease
	PX140101010300	Do you (Does your child) have any of the more following diseases? Thyroid disease show less	Variable Mapping
PX140101_Autoimmune_Diseases_Vitiligo
	PX140101010900	Do you (Does your child) have any of the more following diseases? Vitiligo show less	N/A

Diabetes

Measure Name

Autoimmune Diseases Related to Type I Diabetes

Release Date

May 10, 2010

Definition

A questionnaire to ascertain a study participant’s history of autoimmune diseases.

Purpose

In Type 1 diabetes, insulin deficiency is caused by autoimmune destruction of pancreatic beta cells (American Diabetes Association, 2014).

Keywords

diabetes, multiple sclerosis, celiac disease, thyroid disease, myasthenia gravis

Measure Protocols

Protocol ID	Protocol Name
140101	Autoimmune Diseases Related to Type I Diabetes

Publications

There are no publications listed for this protocol.

Mapping for PX140101_Autoimmune_Diseases_Celiac_Disease

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00091002	Has the patient ever been told by a healthcare provider that they have: Celiac disease - ever had

Mapping for PX140101_Autoimmune_Diseases_Inflammatory_Bowel_Disease

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Collaborative Association Study of Psoriasis	phv00020022	Patient has IBD or Crohn's disease
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00090731	Ulcerative Colitis
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00090746	Crohn's Disease
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00091006	Has the patient ever been told by a healthcare provider that they have: ulcerative colitis - ever had
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00091008	Has the patient ever been told by a healthcare provider that they have: Crohn's disease - ever had
Effect of Crohn's Disease Risk Alleles on Enteric Microbiota	phv00090590	Subject affected by inflammatory bowel disease or not
eMERGE Clinical Center at Partners HealthCare	phv00252009	Phenotype: Inflammatory Bowel Disease (IBD)
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081411	INFLAMMATORY BOWEL DISORDER (CROHN'S, ULCERATIVE COLITIS): Subject History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081542	INFLAMMATORY BOWEL DISORDER (CROHN'S, ULCERATIVE COLITIS): Subject History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081734	INFLAMMATORY BOWEL DISORDER (CROHN'S, ULCERATIVE COLITIS): Subject history of disease
Genetic Multiple Sclerosis Associations - GeneMSA	phv00073080	Subject's history of disease - INFLAMMATORY BOWEL DISORDER (CROHNS - ULCERATIVE COLITIS)
Genome Wide Association Study in Familial Crohn's Disease	phv00190287	Inflammatory bowel disease affection status of participant [Affected, Unaffected]
NHLBI Cleveland Family Study (CFS) Candidate Gene Association Resource (CARe)	phv00123508	95 Ulcerative Colitis/Crohn's
Whole Genome Association Study of Bipolar Disorder	phv00011668	B3c3. Have you had any of the following conditions: ulcers or other bowel diseases? If yes: ulcerative colitis. (Participants with European ancestry). DIGS2
Women's Health Initiative	phv00078518	Ulcerative colitis ever

Mapping for PX140101_Autoimmune_Diseases_Lupus_Or_SLE

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00207693	Has a doctor ever told you that you had lupus? Q5A [Medical History Questionnaire, exam 4]
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00091038	Has the patient ever been told by a healthcare provider that they have: lupus - ever had
Genetic Multiple Sclerosis Associations - GeneMSA	phv00073162	Subject's history of disease - LUPUS
Genotype-Tissue Expression (GTEx)	phv00169170	Systemic Lupus
NIDCR Sjogren's International Collaborative Clinical Alliance (SICCA)	phv00226905	Physician confirmed Systemic Lupus Erythematosus
NIDCR Sjogren's International Collaborative Clinical Alliance (SICCA)	phv00226903	Self reported Systemic Lupus Erythematosus
Whole Genome Association Study of Bipolar Disorder	phv00014815	B 3.d. Lupus, (Participants with European ancestry). DIGS3
Whole Genome Association Study of Systemic Lupus Erythematosus	phv00066336	Diagnosis of SLE (fulfillment of four or more of the criteria of the American College of Rheumatology (ACR)
Women's Health Initiative	phv00156366	F33 Lupus
Women's Health Initiative	phv00156278	F33 Lupus
Women's Health Initiative	phv00170635	F33 Lupus
Women's Health Initiative	phv00170717	F33 Lupus
Women's Health Initiative	phv00193665	F33 Lupus
Women's Health Initiative	phv00193777	F33 Lupus
Women's Health Initiative	phv00080412	F33 Lupus
Women's Health Initiative	phv00080354	F33 Lupus
Women's Health Initiative	phv00078519	Lupus ever

Mapping for PX140101_Autoimmune_Diseases_Multiple_Sclerosis

dbGAP Study	dbGAP Variable	dbGAP Variable Description
CARDIA Cohort	phv00119917	MULTIPLE SCLEROSIS? Q 23
CARDIA Cohort	phv00118540	MULTIPLE SCLEROSIS? Q 22
CARDIA Cohort	phv00117060	MULTIPLE SCLEROSIS. Q 20
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00091014	Has the patient ever been told by a healthcare provider that they have: multiple sclerosis - ever had
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081743	MULTIPLE SCLEROSIS: Subject history of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081625	MULTIPLE SCLEROSIS: Subject History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081426	MULTIPLE SCLEROSIS: Subject History of disease
Genetic Multiple Sclerosis Associations - GeneMSA	phv00073116	Subject's history of disease - MULTIPLE SCLEROSIS
Genotype-Tissue Expression (GTEx)	phv00169173	Multiple Sclerosis
Ischemic Stroke Genetics Study (ISGS)	phv00024313	The presence or absence of multiple sclerosis in the subjects themselves as determined by clinician's interview.
Neurodevelopmental Genomics: Trajectories of Complex Phenotypes	phv00194348	Multiple Sclerosis - Do/did you have this problem?
NHLBI Cleveland Family Study (CFS) Candidate Gene Association Resource (CARe)	phv00123538	95 Multiple Sclerosis
NINDS Parkinson's Disease	phv00023987	The presence or absence of multiple sclerosis in the subjects themselves as determined by clinician's interview.
NINDS Repository Motor Neuron Disease/ALS Study	phv00000398	'Present' means that the individual subject indicates during clinician's interview that there is a medical history of multiple sclerosis. 'Absent' means that the subject does not have a medical history of the disorder.
NINDS Repository Neurologically Normal Control Collection	phv00000265	The presence or absence of multiple sclerosis in the subjects themselves as determined by clinician's interview.
Whole Genome Association Study of Bipolar Disorder	phv00014713	B 3h. Multiple Sclerosis (MS), (Participants with European ancestry). DIGS3
Whole Genome Association Study of Bipolar Disorder	phv00011684	B3h. Have you had any of the following conditions: multiple sclerosis? YEAR OF ONSET. (Participants with European ancestry). DIGS2
Whole Genome Association Study of Bipolar Disorder	phv00011683	B3h. Have you had any of the following conditions: multiple sclerosis? (Participants with European ancestry). DIGS2
Women's Health Initiative	phv00078328	Multiple sclerosis
Women's Health Initiative	phv00078187	Multiple sclerosis
Women's Health Initiative	phv00078047	Multiple sclerosis
Women's Health Initiative	phv00077883	Multiple sclerosis
Women's Health Initiative	phv00077773	Multiple sclerosis
Women's Health Initiative	phv00077648	Multiple sclerosis

Mapping for PX140101_Autoimmune_Diseases_Myasthenia_Gravis

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Genome-wide Association Study of Myasthenia Gravis	phv00201000	Diagnosis of participant

Mapping for PX140101_Autoimmune_Diseases_Pernicious_Anemia

dbGAP Study	dbGAP Variable	dbGAP Variable Description
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00048893	N3c. Infection, major surgery, minor outpatient surgery, endocrinological, or skin complication: autoimmune endocrine event: pernicious anemia
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00049311	N3c. Infection, major surgery, minor outpatient surgery, endocrinological, or skin complication: autoimmune endocrine event; pernicious anemia
Framingham Cohort	phv00000605	LIFETIME HISTORY OF PERNICIOUS ANEMIA, EXAM 2

Mapping for PX140101_Autoimmune_Diseases_Psoriasis

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00091025	Has the patient ever been told by a healthcare provider that they have: psoriasis - ever had
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081447	PSORIASIS: Subject History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081448	PSORIASIS: Family History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081449	PSORIASIS: Number of family members with history of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081640	PSORIASIS: Subject History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081641	PSORIASIS: Family History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081642	PSORIASIS: Number of family members with history of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081779	PSORIASIS: Subject history of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081780	PSORIASIS: Family history of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081781	PSORIASIS: Number of family members with history of disease
Genetic Multiple Sclerosis Associations - GeneMSA	phv00073153	Subject's history of disease - PSORIASIS
Genetic Multiple Sclerosis Associations - GeneMSA	phv00073154	Family history of disease - PSORIASIS

Mapping for PX140101_Autoimmune_Diseases_Rheumatoid_Arthritis

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Chronic Renal Insufficiency Cohort Study (CRIC)	phv00173277	History of Rheumatoid Arthritis
Diet, Genetic Factors, and the Gut Microbiome in Crohn's Disease	phv00091036	Has the patient ever been told by a healthcare provider that they have: rheumatoid arthritis - ever had
eMERGE Clinical Center at Partners HealthCare	phv00252008	Phenotype: Rheumatoid arthritis
Framingham Cohort	phv00005452	ARTHRITIS B - HAS A DOCTOR EVER TOLD YOU THAT YOU HAVE HAD RHEUMATOID ARTHRITIS?
Framingham Cohort	phv00006654	NON-CARDIOVASCULAR - RHEUMATOID ARTHRITIS
Framingham Cohort	phv00004185	HAVE YOU EVER BEEN TOLD YOU HAD HAD RHEUMATOID ARTHRITIS?
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081450	RHEUMATOID ARTHRITIS: Subject History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081554	RHEUMATOID ARTHRITIS: Subject History of disease
GenADA/LONG/Imaging (Genetic Alzheimer's Disease Associations)	phv00081698	RHEUMATOID ARTHRITIS: Subject history of disease
Genetic Epidemiology of COPD (COPDGene)	phv00159627	Rheumatoid arthritis
Genetic Multiple Sclerosis Associations - GeneMSA	phv00073048	Subject's history of disease - RHEUMATOID ARTHRITIS
Genome Wide Association Study of Chronic TMD: Discovery Phase	phv00260479	MED 7. Dermal Musocutaneous Musculoskeletal: rheumatoid arthritis.
Genotype-Tissue Expression (GTEx)	phv00169190	Rheumatoid Arthritis
NHLBI Cleveland Family Study (CFS) Candidate Gene Association Resource (CARe)	phv00123540	95 Rheumatoid Arthritis
NIDCR Sjogren's International Collaborative Clinical Alliance (SICCA)	phv00226902	Self reported Rheumatoid Arthritis
NIDCR Sjogren's International Collaborative Clinical Alliance (SICCA)	phv00226904	Physician confirmed Rheumatoid Arthritis
OPPERA baseline case-control study of chronic TMJD	phv00223140	7. Dermal Mucocutaneous Musculoskeletal: Rheumatoid Arthritis
OPPERA Prospective Cohort Study of First-Onset TMJD	phv00224219	7. Dermal Mucocutaneous Musculoskeletal: Rheumatoid Arthritis
Whole Genome Sequencing of Two 22q11DS Trios	phv00222269	Juvenile rheumatoid arthritis status
Women's Health Initiative	phv00156272	F33 Rheumatoid Arthritis
Women's Health Initiative	phv00156360	F33 Rheumatoid Arthritis
Women's Health Initiative	phv00170629	F33 Rheumatoid Arthritis
Women's Health Initiative	phv00170711	F33 Rheumatoid Arthritis
Women's Health Initiative	phv00080406	F33 Rheumatoid Arthritis
Women's Health Initiative	phv00080348	F33 Rheumatoid Arthritis
Women's Health Initiative	phv00078542	Rheumatoid arthritis ever

Mapping for PX140101_Autoimmune_Diseases_Thyroid_Disease

dbGAP Study	dbGAP Variable	dbGAP Variable Description
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00206782	[Medical history]. General (History of?) Q9i - Thyroid disease [Heart Failure Hospital Record Abstraction Form, HFA]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00207691	Has a doctor ever told you that you had goiter or other thyroid disease? Q4A [Medical History Questionnaire, exam 4]
Atherosclerosis Risk in Communities (ARIC) Cohort	phv00207692	Do you still have goiter or other thyroid disease? Q4C [Medical History Questionnaire, exam 4]
CARDIA Cohort	phv00112997	THYROID PROBLEM
CARDIA Cohort	phv00114345	THYROID PROBLEM. Q 6
CARDIA Cohort	phv00117028	THYROID DISEASE. Q 11
CARDIA Cohort	phv00118502	THYROID DISEASE? Q 11
CARDIA Cohort	phv00119858	THYROID DISEASE? Q 11
NIDCR Sjogren's International Collaborative Clinical Alliance (SICCA)	phv00226907	Self reported Thyroid disease
NIDCR Sjogren's International Collaborative Clinical Alliance (SICCA)	phv00226912	Physician confirmed Thyroid disease
Whole Genome Association Study of Bipolar Disorder	phv00017026	B1. Thyroid, Yes/No. (Participants with European ancestry). DIGS4
Whole Genome Association Study of Bipolar Disorder	phv00051932	B1 Thyroid, Yes/No, (African American participants). DIGS4
Women's Health Initiative	phv00078547	Thyroid gland problem ever