Our mission is to give the world the data access and analysis tools it needs to improve the health and quality of life for people with Down syndrome — faster than ever before.
The goal of the National Institutes of Health (NIH) INCLUDE Project is to improve the health and quality of life for people with Down syndrome (DS). INCLUDE stands for INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE.
People with Down syndrome develop certain medical conditions, like Alzheimer’s disease and autoimmune conditions, more often than the general population, yet they seem to be protected from some cancers and other common co-occurring conditions. In 2018, the NIH launched the INCLUDE Project to help understand why.
The INCLUDE Project aims to study the root causes of co-occurring conditions experienced by people with Down syndrome. This research will also help others without Down syndrome who are affected by the same conditions.
The INCLUDE Project funds researchers from many different fields. These researchers work closely with the Data Coordinating Center (DCC) to access the data and tools they need to speed up their research.
Our vision is of a community that has the resources needed to bring about progress in the lab, in the clinic, in the classroom, in government and in all other areas in society - all to help improve the future of healthcare for people with Down syndrome.
Individuals with Down syndrome have an increased risk of some medical conditions, while being protected from others. Understanding what causes these unique risks and resiliencies will take more research and data than ever before.
Because of this, it can be especially hard to study certain co-occurring conditions in people with Down syndrome.
The INCLUDE Data Coordinating Center (DCC) was launched in 2020 to overcome this challenge.
To make Down syndrome health data more shareable and easier to find, the DCC offers a free-to-use tool called the INCLUDE Data Hub. The INCLUDE Data Hub brings information and resources from many sources together in one place. With these tools, scientists and community members can work together more easily. And rare conditions within the Down syndrome community can be studied faster than ever before.
If you would like to learn more about the Data Hub or how to submit your research data, please contact us at firstname.lastname@example.org.
The INCLUDE DCC brings together experts in Down syndrome research, data analysis and team-driven science. INCLUDE DCC activities are organized into three cores, directed by three leaders.
Led by Dr. Joaquin Espinosa, the Administrative and Outreach Core (AOC) manages the overall INCLUDE DCC project. The AOC also leads outreach, education, and engagement efforts across all partner communities. This will ensure the needs of researchers and people with Down syndrome are met by the INCLUDE Data Hub.
Dr. Joaquin Espinosa
Executive Director of the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus
Led by Dr. Brian O’Connor, the Data Management Core (DMC) designs methods for data collection, organization, processing, and sharing. The DMC makes sure data are compatible, secure, and managed according to all applicable regulations and agreements.
Dr. Brian O’Connor
Chief Data Officer of Sage Bionetworks
Led by Dr. Adam Resnick, the Data Portal Core (DPC) oversees the growth of the INCLUDE Data Hub, a source for data sharing, analysis, and scientific discovery. The DPC is creating tools to search huge amounts of data and biospecimens. These tools will also generate graphics and charts to help interpret that data. The ability to work together with other data resources and platforms is also a high priority.
Dr. Adam Resnick
Director of the Center for Data Driven Discovery for Biomedicine (D3b) at Children's Hospital of Philadelphia
The INCLUDE DCC team has experts from seven different organizations. Each organization brings special skills and knowledge that are needed to create and run the DCC. INCLUDE DCC team members work together from all over the United States and Canada.
The Crnic Institute is a leading center for Down syndrome research.
The Crnic Institute brings expert skills in Down syndrome research. It leads messaging and community outreach and shares its own research data and tools with the INCLUDE Data Hub.
Dr. Joaquin Espinosa
Sage is a well-known science non-profit organization. Its mission is to encourage open access to data in biomedical research.
Sage develops strategies to manage, share and make data available to the community. Sage will also bring their expertise of running DREAM Challenges, a competition for solving complex data challenges to engage the research community in new discoveries.
Brian O’Connor, Ph.D.
Chief Data Officer; Data & Tooling
D3b creates tools to help researchers better understand complex medical data and make important discoveries.
D3b leads the design and build of the INCLUDE Data Hub and website. It also helps with community outreach, messaging and project management.
Dr. Adam Resnick
VUMC is a premier academic medical research center. Dr. Carroll’s team assesses electronic health records and genetic information to understand how they are related.
Dr. Carroll’s team will provide their expertise in clinical data management to bring together the many clinical data resources of the INCLUDE program.
Dr. Robert Carroll
Assistant Professor of Biomedical Informatics
CHUSJ is the largest mother and child hospital centre in Canada. Dr. Ferretti's team creates software tools to better understand biological data.
Dr. Ferretti's team leads the design and build of key elements of the INCLUDE Data Hub.
Dr. Vincent Ferretti
Associate Director of Cyber-Infrastructure and Software Development Research Center of CHUSJ
SGB develops data analysis platforms for biomedical research which let scientists work together virtually and securely share information on demand.
SGB supports the cloud-based platform used to access, share and analyze data from the INCLUDE Data Hub.
Dr. Jack DiGiovanna
Senior Vice President
TISLab brings together data from a wide range of sources to help solve problems related to medicine, health, and more.
The TISLab helps create frameworks to bring together data from many different areas of Down syndrome research.
Dr. Melissa Haendel
Chief Research Informatics Officer