SCD Neurology, Quality of Life, and Health Services
| Select | Protocol | ID |
|---|---|---|
|
#820601 |
|
|
#820201 |
|
|
#820501 |
|
|
#820502 |
|
|
#820503 |
|
|
#820504 |
|
|
#820801 |
|
|
#820802 |
|
|
#820202 |
|
|
#820101 |
|
|
#820102 |
|
|
#221302 |
|
|
#221301 |
|
|
#820702 |
|
|
#820401 |
|
|
#820701 |
|
|
#821001 |
|
|
#821002 |
|
|
#821201 |
Release Date:
July 30, 2015
Scope of Collection
| Element Considered | Final Measures in Toolkit |
|---|---|
| Neurologic Complications | |
| Silent Stroke | Stroke Impact/Outcome |
| Overt Stroke | Functionality after Stroke |
| Transcranial Doppler (TCD) | Stroke Risk in Children with Sickle Cell Disease |
| Diffusion Tensor Imaging (DTI) | |
| Angiography | |
| Non-stroke neurologic complications | |
Cognitive complications
|
Adaptive Behavior/Adaptive Function |
| Intelligence Scale | |
| Transfusion | |
| Acute and Chronic Pain | |
| Interference | |
Use of Substances of Addiction
|
|
| Transfusion | |
| Quality of Life and Patient-Reported Outcomes | |
Functional measures of well-being
|
Quality of Life in Sickle Cell Disease |
| Self-efficacy in Sickle Cell Disease | |
Pain
|
|
Activities of Daily Living
|
|
| Health Services | |
| Quality of Care - Hospitalization, re-hospitalization - TCD, treatments, medications | Quality of Care |
| Preventive care (flu shots, hydroxyurea) | |
| Acute Care | |
| Quality indicators for pediatric sickle cell disease |
Working Group Roster:
WG Members:
|
Robert J. Adams, MD, MS, Co-Chair Medical University of South Carolina Charleston, SC |
Julie A. Panepinto, MD, MSPH, FAAP, Co-Chair Medical College of Wisconsin Milwaukee, WI |
|
F D. Armstrong, PhD University of Miami Miami, FL |
David C. Brousseau, MD, MS Medical College of Wisconsin Milwaukee, WI |
|
Judith A. Paice, PhD, RN Northwestern University Evanston, IL |
Steven Pavlakis, MD Maimonides Medical Center Brooklyn, NY |
|
Marsha J. Treadwell, PhD Children's Hospital Oakland Research Institute Oakland, CA |
Sickle Cell Disease Panel Liaison, WG Manager and WG Supervisor:
|
Wayne Huggins, PhD, WG Supervisor RTI International Research Triangle Park, NC |
Tracey L. Grant, MS, WG Manager RTI International Statistics and Epidemiology Division Research Triangle Park, NC |
Sickle Cell Disease Research and Scientific Panel (SRSP) Liaison:
|
James R. Eckman, MD Emory University School of Medicine Atlanta, GA |
Kathryn L. Hassell, MD University of Colorado, Denver Denver, CO |
|
Ellen M. Werner, PhD, MA National Heart, Lung, and Blood Institute (NHLBI) Blood Diseases Branch Bethesda, MD |
NIH National Heart, Lung and Blood Institute Liaison:
|
Susan M. Czajkowski, PhD National Heart, Lung, and Blood Institute (NHLBI) Bethesda, MD |
Michael M. Engelgau, MD, MS National Heart, Lung, and Blood Institute (NHLBI) Bethesda, MD |
|
Joylene I. John-Sowah, MD, MPH National Heart, Lung, and Blood Institute (NHLBI) Bethesda, MD |
Harvey Luksenburg, MD National Heart, Lung, and Blood Institute (NHLBI) Bethesda, MD |
|
Emmanuel K. Peprah, PhD National Heart, Lung, and Blood Institute (NHLBI) Bethesda, MD |
National Human Genome Research Institute (NHGRI) Liaison:
|
Vence L. Bonham, Jr., JD National Human Genome Research Institute (NHGRI) Bethesda, MD |
Keisha Findley, PhD National Human Genome Research Institute (NHGRI) Bethesda, MD |
National Cancer Institute (NCI) Liaison:
|
Denise Stredrick, PhD National Cancer Institute (NCI) Rockville, MD |
National Institute of Arthritis and Musculoskeletal and Skin Diseases Liaison:
|
Phil Tonkins Jr., DrPH National Heart, Lung, and Blood Institute (NHLBI) Bethesda, MD |
James Witter, Md, PhD, FACR National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Bethesda, MD |
Eunice Kennedy Shriver National Institute of Child Health and Human Development Liaison:
|
Tina Urv, PhD Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Rockville, MD |
National Institute of Diabetes and Digestive and Kidney Diseases Liaison:
|
Kevin Abbott, MD, MPH National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Bethesda, MD |
National Institute on Minority Health and Health Disparities Liaison:
|
Bridgett Rahim-Williams, PhD, MPH, MA National Institute on Minority Health and Health Disparities (NIMHD) Bethesda, MD |
National Institute of Neurological Disorders and Stroke Liaison:
|
Joanne C. Odenkirchen, MPH National Institute of Neurological Disorders and Stroke (NINDS) Rockville, MD |
National Library of Medicine Liaison:
|
Clement J. McDonald, MD National Library of Medicine (NLM) Bethesda, MD |
Jerry Sheehan, MS, BS National Library of Medicine (NLM) Bethesda, MD |
Health Resources & Services Administration Liaison:
|
Edward D. Ivy, MD, MPH Health Resources & Services Administration Rockville, MD |
Centers for Disease Control and Prevention Liaison:
|
Mike Soucie, PhD Centers for Disease Control and Prevention Atlanta, GA |
Supplemental Information includes protocols that the Working Group or Expert Review Panel considered useful and highly relevant to the domain but do not meet the criteria for inclusion in the Toolkit.
Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection Supplemental Information includes:- 01 SCD Neurology QualityofLife Health Services Specialty Collection Scope
- Brain Arterial Blood Supply 08July2015
- Brain Morphology CT 08July2015
- Brain Morphology MRI 08July2015
Additional Information:
There is no additional information for this collection.