Studies

Genetic, clinical and biospecimen data within the INCLUDE Data Hub help researchers make important discoveries faster than ever before. The following is an outline of each dataset available through the INCLUDE Data Hub. By clicking on each study, you can view basic information on the type of data collected and the major goals of the study’s research team.

A man holding a toddler with Down syndrome
Crnic Institute Human Trisome Project®
The goal of the HTP is to enable advanced therapeutic approaches to enhance the quality of life and extend the lifespan of those with trisomy 21 through the study of the co-occurring conditions of Down syndrome.

https://trisome.org/

DS-Connect®: The Down Syndrome Registry
The purposes of DS-Connect: The Down Syndrome Registry are to better understand the health of people with Down syndrome and to inform eligible participants who, based on their health history, may be a match for research studies or new clinical trials.

https://dsconnect.nih.gov/

Genomic Analysis of Congenital Heart Defects and Acute Lymphoblastic Leukemia in Children with Down Syndrome
Since a key aspect of Kids First is to help uncover connections between structural birth defects and childhood cancers, the program will partner with INCLUDE and TOPMed to advance our understanding the biological factors that may lead to both heart disease and leukemia in individuals with DS.

https://kidsfirstdrc.org

Benaroya Research Institute (BRI)
The Down syndrome registry at Benaroya Research Institute (BRI) builds on institutional expertise to collect and analyze longitudinal biological samples and concomitant clinical metadata across the lifespan of people with Down syndrome. The goal is to help advance therapeutic approaches to predict, prevent and cure co-occurring conditions of Down syndrome.

https://www.benaroyaresearch.org/our-research/biorepositories/down-syndrome

Alzheimer Biomarker Consortium - Down Syndrome (ABC-DS)
The goal of the Alzheimer Biomarker Consortium – Down Syndrome (ABC-DS) is to study a group of adults with Down syndrome over their lives to single out early biomarkers of the onset of Alzheimer's disease.

https://www.nia.nih.gov/research/abc-ds