RTI to serve as coordinating center for new Down syndrome research initiative

In collaboration with Emory University, RTI will help establish a large-scale cohort of individuals with Down syndrome by overseeing program organization, standardization of data collection, data management, and participant and family engagement

RESEARCH TRIANGLE PARK, N.C. — RTI International, a nonprofit research institute, has received an award from the National Institutes of Health (NIH) to serve as the Clinical Cohort Coordinating Center (DS-4C) for the newly established Down Syndrome Cohort Development Program (DS-CDP). The long-term study will establish a diverse, large-scale dataset based on a cohort of individuals with Down syndrome that will allow the research community to better understand conditions that co-occur with Down syndrome from birth to adulthood.

DS-CDP is part of INCLUDE Project, also known as the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndrome, an NIH initiative that has been investigating conditions that affect individuals with Down syndrome since 2018.

In its role, RTI will partner with the Emory University Down Syndrome Center to lead the Down Syndrome Clinical Cohort Coordinating Center (DS-4C). Under the leadership of principal investigators Jessica Ezzell Hunter, Ph.D. (RTI) and Tracie Rosser, Ph.D. (Emory), the DS-4C will implement a shared data collection protocol, which will include determining what phenotype data is captured and ensuring the same data is collected across all participants. 

“The DS-4C will leverage RTI’s expertise in coordinating complex, multi-site projects and Emory University Down Syndrome Center’s extensive experience in Down syndrome research and community outreach,” said Hunter, a genetic epidemiologist in RTIs GenOmics and Translational Research Center. “We look forward to supporting this important initiative to better understand co-occurring conditions in individuals with Down syndrome of all ages.” 

DS-CDP will engage and enroll thousands of individuals with Down syndrome, including those who have been historically underrepresented in Down syndrome research. Participants will share biological samples, health information and other data, which will be anonymous and available to the research community through the INCLUDE Data Coordinating Center (DCC) and Data Hub. 

The study is expected to begin recruiting in the latter half of 2025 and will expand to include new study sites over the next five to ten years.

Learn more about DS-CDP (via NIH)

Learn more about RTI’s capabilities as a coordinating center for multi-site studies

Learn more about RTI’s GenOmics and Translational Research Center