NIH's INCLUDE Project Launches a Cohort Study Tracking Down Syndrome Health From Birth to Adulthood

Long-term tracking, from birth through adulthood

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), part of NIH, announced a new phase of its INCLUDE Project focused on observing the health of people with Down syndrome across the entire lifespan. According to NICHD, the NIH INCLUDE Project launched a new long-term study, called the Down Syndrome Cohort Development Program, to observe and track health data of people with Down syndrome from birth to adulthood. This reflects a substantial financial commitment: the INCLUDE Project was launched by NIH in 2018 and has invested nearly $435 million in over 350 awards, involving many institutes within the nation’s leading medical research agency.

Why a cohort study matters

Unlike one-time studies, a cohort that follows the same individuals over decades can reveal early patterns — for instance, in infant brain development or the emergence of age-related conditions — and link them to later outcomes. This is especially relevant because people with Down syndrome face a distinct risk profile for conditions such as heart disease, autoimmune disorders, and Alzheimer’s-type dementia, and researchers need robust longitudinal data to understand these mechanisms.

DS-Connect, relaunched as a bridge between families and researchers

Alongside this, NICHD relaunched the DS-Connect: The Down Syndrome Registry platform, where volunteer families share health information that later supports scientific studies. Joaquin Espinosa, executive director of the University of Colorado’s Linda Crnic Institute for Down Syndrome, noted that robust community engagement is essential as we work toward the goal of longer and healthier lives for people with Down syndrome. Funding for this renewed registry is provided by NICHD and NIH’s INCLUDE Project, which seeks to transform understanding of co-occurring conditions that disproportionately impact the Down syndrome community.

What this means for the community

For those following research closely, these initiatives represent key infrastructure: more data, better connected from birth to adulthood, with the potential to accelerate future clinical trials. As always, any decision about registry participation or the management of associated conditions should be discussed with each person’s medical team.

Source: NICHD (Eunice Kennedy Shriver National Institute of Child Health and Human Development), nichd.nih.gov