DS-Connect: Connecting families and those with Down syndrome to research that INCLUDEs them


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Archived Recording
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Thursday, October 25, 2018
1:00 p.m. - 2:00 p.m.
Location: Webinar

Webinar Description

Staff from the National Institutes of Health (NIH) will discuss DS-Connect®: The Down Syndrome Registry (https://DSConnect.nih.gov) and what it can offer families. They will describe how families can fill out surveys, participate in research, and view the aggregate de-identified data. NIH staff will also show how a researcher or clinician interested in any aspect of Down syndrome can use the registry for learning about Down syndrome and recruiting participants for studies. Webinar participants will also learn about progress in studies being supported by DS-Connect.

In the presentation, NIH staff will also discuss a new Trans-NIH initiative called INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) (https://www.nih.gov/include-project) which was launched in June 2018. INCLUDE has the potential to improve quality of life for people with Down syndrome, and will require development of a large Down syndrome cohort in order to facilitate research studies and clinical trials for treatments for co-occurring conditions in Down syndrome. The success of this initiative depends on efforts to create a large cohort of people with Down syndrome from those registered in DS-Connect, partnerships with advocacy groups that comprise the Down Syndrome Consortium, and participation from families receiving care in clinics and academic centers. The NIH welcomes feedback about the ways in which members of the AUCD and the Council on Research and Evaluation can partner on mutually beneficial research interests and priorities for those with Down syndrome.

A Webinar from AUCD's Council on Research and Evaluation (CORE)


Melissa A. Parisi, M.D., Ph.D. 

Dr. Melissa A. Parisi is the Chief of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH). She earned her M.D. and Ph.D. in developmental biology from Stanford University. She joined NICHD in 2008 and currently oversees the Intellectual and Developmental Disabilities Research Centers program at NICHD, and is focused on advancing basic, clinical, and translational research that will improve the lives of individuals with developmental disabilities. Dr. Parisi has led the development team for the NIH-funded DS-Connect®: The Down Syndrome Registry, an online, secure, confidential database with demographic and health information about individuals with Down syndrome designed to facilitate research on this condition and connect families with resources about Down syndrome.


Lisa Kaeser, J.D. 

Ms. Lisa Kaeser serves as the Director in the Office of Legislation and Public Policy at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health, HHS. She works as a liaison between the NICHD's leadership and its many constituencies, which include Congress, the scientific and research advocacy communities, and the public, including the organizations that comprise the Down Syndrome Consortium, of which she is the Executive Secretary. She also was one of two primary authors of DS Directions: the NIH Research Plan on Down Syndrome, published in 2014. Prior to joining the NICHD, Ms. Kaeser worked for over a decade in women's health research and policy issues at The Alan Guttmacher Institute, and before that for three years on Capitol Hill as a legislative assistant to Rep. Jim Moody (D-WI). She has a law degree from Vermont Law School and completed her undergraduate work at Dartmouth College.


Sujata Bardhan, Ph.D.

Dr. Sujata Bardhan is a Scientific Program Manager in the Intellectual and Developmental Disabilities Branch (IDDB) at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), at the National Institutes of Health (NIH). Dr. Bardhan earned her doctorate degree in Chemistry from Boston University. Prior to joining NICHD in 2013, she worked in industry and as an Adjunct Assistant Professor in the Department of Chemistry at the College of Staten Island. She is interested in the development of therapies for the co-occurring conditions associated with Down syndrome. She has been involved in the development of "DS-Connect®: The Down Syndrome Registry," and currently serves as the registry coordinator. She is also a registry coordinator for PregSource®: Crowdsourcing to Understand Pregnancy, an online registry designed to gather information from women about their pregnancy experiences.