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

National Institutes Of Healt logo

National Cancer Institute (NCI)

National Heart, Lung, and Blood Institute (NHLBI)

National Human Genome Research Institute (NHGRI)

National Institute on Aging (NIA)

National Institute of Allergy and Infectious Diseases (NIAID)

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

National Institute on Deafness and Other Communication Disorders (NIDCD)

National Institute of Dental and Craniofacial Research (NIDCR)

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

National Institute of Mental Health (NIMH)

National Institute on Minority Health and Health Disparities (NIMHD)

National Institute of Neurological Disorders and Stroke (NINDS)

National Center for Advancing Translational Sciences (NCATS)

American Academu of Pediatrics logo


aaidd logo


aucd logo


Down Syndrome Affiliates In Action logo


dsmig logo

LuMind Research Down Syndrome Foundation logo

Global Down Syndrome logo


imdsa logo





Lejeuneusa logo


National Down Syndrome Congress logo


NDSS logo


Down Syndrome International logo


Specical Olympics logo


t21rs logo

Seft Advocates logo

Registry Team

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

Lisa Kaeser, J.D.

Aubrey Callwood, ISSO

Sujata Bardhan,

Debbie Jae, M.S.
Program Director
Invitae Corporation

Mr. Albert Carrasco
Systems Engineer
Invitae Corporation

Founding 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

Elisabeth Dykens, Ph.D.
Vanderbilt Kennedy Center

Gary Goldstein, M.D.
Kennedy Krieger Institute

Vittoria Aiello

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.

Laurie Ryan, Ph.D.

Michael Bender, Ph.D.,

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

Lisa Kaeser, J.D.,

Sujata Bardhan,