Planning a Virtual Down Syndrome Cohort Across the Lifespan

September 23-24, 2019


Intellectual and Developmental Disabilities Branch (IDDB), Division of Extramural Research (DER), NICHD


William F. Bolger Center, Osgood Building, Stained Glass Hall, 9600 Newbridge Drive, Potomac, MD 20854


NIH launched the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project in 2018 in support of a congressional directive in the fiscal year 2018 Omnibus Appropriations. The directive calls for a new trans-NIH research initiative on critical health and quality-of-life needs for individuals with Down syndrome.

Workshop participants will develop a plan to meet the goals of Component 2 of the INCLUDE research plan. These goals include development of a cohort to perform deep phenotyping and studying co-existing conditions to develop a comprehensive genomic, epigenomic, transcriptomic, and proteomic map to help understand the predisposing risk and protective factors that underlie the highly penetrant features in Down syndrome.

The workshop has two components: the first focuses on the clinical aspects of Down syndrome and the ‘omics and biospecimen needs of the effort; the second focuses on the data harmonization, sharing, and information technology (IT) needs of the effort. The result of the workshop will be a blueprint for creation of a Down syndrome cohort to study across the lifespan.


For logistical questions:

Alex Simpson

For program-related questions:

Sujata Bardhan, Ph.D., IDDB, DER, NICHD

Melissa Parisi, M.D., IDDB, DER, NICHD

Please note: Views expressed during NICHD-sponsored events do not necessarily reflect the opinions or the official positions of NICHD, NIH, or HHS.
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