Who We Are

  • The Down Syndrome Consortium: supports and publicizes the Registry
  • The Registry Team: manages the content and sends out notices and other information.
  • Two oversight boards for DS-Connect®
    • The DS-Connect® Operations Board oversees the day-to-day activities of the Registry, develops surveys, and makes decisions about access to Registry information. It also works with the registry coordinators and Governance Board to implement policies.
    • The DS-Connect® Governance Board makes decisions about the overall policies and procedures that govern the Registry.

Who is involved

DS Consortium

 


Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)


National Cancer Institute (NCI)


National Heart, Lung and Blood Institute (NHLBI)


National Institute of Mental Health (NIMH)


National Institute of Neurological Disorders and Stroke (NINDS)


National Institute on Aging (NIA)


National Institute on Minority Health and Health Disparities (NIMHD)

 

 

 

 

 

 

 

 

 

Registry Team

Melissa Parisi,
M.D., Ph.D.,
NICHD

Lisa Kaeser, J.D.
NICHD

Aubrey Callwood, ISSO
NICHD

Sujata Bardhan,
Ph.D., NICHD

Debbie Jae, M.S.
Program Director
PatientCrossroads

Mr. Albert Carrasco
Systems Engineer
PatientCrossroads

Governance Board

David Tolleson
National Down
Syndrome Congress

Michael M. Harpold, Ph.D.
LuMind Foundation

Tom Blumenthal, Ph.D.
Linda Crnic Institute
for DS

Mark L. Batshaw, M.D.
Children's National Medical Center

John Mathewson
HSC Foundation

Marilyn J. Bull, M.D.
American Academy of
Pediatrics

Elisabeth Dykens, Ph.D.
Vanderbilt Kennedy Center

Gary Goldstein, M.D.
Kennedy Krieger Institute

Vittoria Aiello
Parent

Operations Board

Stephanie Sherman, Ph.D.
Emory University

Peter Bulova, M.D.
University of Pittsburgh

Wayne Silverman, Ph.D.
Kennedy Krieger Institute

Priya Kishnani, M.D., MBBS
Duke University School of Medicine

Robert Riddle, Ph.D.
NINDS

Laurie Ryan, Ph.D.
NIA

Michael Bender, Ph.D.,
NIGMS

Melissa Parisi,
M.D., Ph.D.
NICHD

Lisa Kaeser, J.D.,
NICHD

Sujata Bardhan,
Ph.D., NICHD