Working groups were formed to review five clinical research study domains:

• Genetics/Assays;
• Physical Examination/Medical History;
• Cardiopulmonary, Renal and Cerebrovascular;
• Outcomes; and
• Monitoring Side Effects.

These working groups were comprised of SCD adult and pediatric specialists, patient advocates, genetic therapy specialists, neuropsychologists, nurses, data managers, manufacturers, industry members, and academics. After a Public Review period and follow-up with working groups, version 1.0 of the standardized data forms have been released. The forms will also be made available through the National Library of Medicine (NLM) website. This will be an iterative process, and feedback from users will be encouraged.

 

 

 

Julie Kanter, MD (Co-Chair)
Medical University of South Carolina, Charleston, South Carolina

John Pierciey, MSc. (Co-Chair)
bluebird bio, Cambridge, Massachusetts

Gang Bao, PhD
Rice University, Houston, Texas

Francine Baker
Patient Advocate

Carlo Brugnara, MD
Boston Children’s Hospital, Boston, Massachusetts

Ashraf El Fiky, MBBCh, PhD
Emmes, Rockville, Maryland

Bindu George, MD
Food and Drug Administration, Silver Spring, Maryland

Joseph Gold, PhD
City of Hope, Duarte, California

Allison Intondi, PhD
Integral Medicines, San Francisco, California

Alison Kujawski, CHES
American Society of Gene & Cell Therapy, Washington, DC

LaTasha Lee, PhD, MPH
National Minority Quailty Forum, Washington, DC

John Manis, MD
Boston Children’s Hospital, Boston, Massachusetts

David C. Shyr, MD
Stanford Medicine, Palo Alto, California

John Tisdale, MD
National Institute of Health, Bethesda, Maryland

 

 

Punam Malik, MD (Co-Chair)
Cincinnati Children's Hospital, Cincinnati, Ohio

Mark Walters, MD (Co-Chair)
University of California San Francisco, Oakland, California

Smita Bhatia, MD
University of Alabama at Birmingham, Birmingham, Alabama

Charles Chesson, PhD
Amerian Society of Hematology Research Collaborative, Washington, DC

Nancy Di Fronzo, PhD
National Institute of Health, Bethesda, Maryland

Mary Eapen, MRCPI, MS, MBBS
Medical College of Wisconsin, Milwaukee, Wisconsin

Barbara Kroner, PhD
Research Triangle Institute, Durham, North Carolina

Navneet Majhail, MD, MS
Cleveland Clinic, Cleveland, Ohio

Joseph McIntosh, MD
Aruvant Sciences, Inc., Basel, Switzerland

Jeremy Pantin, MD
HCA Healthcare, Nashville, Tennessee

Lydia Harley Pecker, MD
Johns Hopkins University, Baltimore, Maryland

Katy Rezvani, MD, PhD
The University of Texas, Houston, Texas

Shalini Shenoy, MD
Washington University School of Medicine, St. Louis, Missouri

 

 

Patrick Carroll, MD (Chair)
Johns Hopkins Medicine, Baltimore, Maryland

Francine Baker
Patient Advocate

M. A. Bender, MD, PhD
University of Washington, Seattle, Washington

Andres Brainsky, MD
CSL Behring, King of Prussia, Pennsylvania

Amanda Brandow, DO
Medical College of Wisconsin, Milwaukee, Wisconsin

Traci Clemons, PhD
Emmes, Rockville, Maryland

Beth Devine, PhD, PharmD, MBA
University of Washington, Seattle, Washington

Meghan Gallagher
bluebird bio, Cambridge, Massachusetts

Susan Geyer, PhD
Mayo Clinic, Tampa, Florida

Gregory Kato, MD
CSL Behring, King of Prussia, Pennsylvania

Megha Kaushal, MD
Food and Drug Administration, Silver Spring, Maryland

Julie Panepinto, MD, MSPH, FAAP
Medical College of Wisconsin, Milwaukee, Wisconsin

Jennifer Popovic, DVM
Research Triangle Institute, Waltham, Massachusetts

Amy Sobota, MD, MPH
Boston University, Boston, Massachusetts

Marsha Treadwell, PhD
University of California San Francisco, Oakland, California

Shauna Whisenton
American Society of Hematology Research Collaborative, Silver Spring, Maryland

Teonna Woolford
Patient/Advocate

 

 

Sophie Lanzkron, MD, MHS (Co-Chair)
Johns Hopkins School of Medicine, Balitmore, Maryland

Deepa Manwani, MD (Co-Chair)
Albert Einstein College of Medicine, Bronx, New York

Anirban Basu, PhD
University of Washington, Seattle, Washington

Velvet Brown-Watts
Patient Advocate/Caregiver

Victoria Coleman-Cowger, PhD
Emmes, Rockville, Maryland

Nahed El Kassar, MD, PhD
National Heart, Lung and Blood Institute, Bethesda, Maryland

Lisa Garrett, RN, CCRP
Washington University in St. Louis, St. Louis, Missouri

Stephanie Guarino, MD
Nemours/Alfred I. duPont Hospital for Children, Wilmington, Delaware

Kavita Natrajan, MD
Food and Drug Administration , Silver Spring, Maryland

Helen Pan, PhD
Research Triangle Institute, Research Triangle Park, North Carolina

Robert Plovnick, MD, MS
American Society of Hematology, Washington, DC

Patricia Steinert, PhD, MBA
Center for International Blood & Marrow Transplant Research, CIBMTR®, Milwaukee, Wisconsin

Yvette Tanhehco, MD, PhD, MS
Columbia University Medical Center, New York, New York

Sara Vesely, PhD
The University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma

Kesha Weeks
Patient Advocate/Caregiver

 

 

Traci Mondoro, PhD
National Heart, Lung and Blood Institute, Bethesda, Maryland

Elizabeth Wagner, MPH
National Heart, Lung and Blood Institute, Bethesda, Maryland

Lis Welniak, PhD
National Heart, Lung and Blood Institute, Bethesda, Maryland

 

 

Sherita Alai, MS
Emmes, Rockville, Maryland

Karen Hewitt
Emmes, Rockville, Maryland

Rebecca Johnson, PhD
Emmes, Rockville, Maryland

Dan Sinnett, PhD
Emmes, Rockville, Maryland

Glenn Tucker
Emmes, Rockville, Maryland