Our Mission

Data Access and Analysis
Tools

Improving the health and quality of life for people with
Down syndrome — FASTER than ever before.

INCLUDE Project

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.

Learn more about the NIH INCLUDE Project

Our Vision

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.

The INCLUDE Data Coordination Center

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 info@includedcc.org.

INCLUDE DCC Information Page

Empowering Research

Tools and Resources
for Researchers

Explore the Data Hub

Create your account and start exploring our studies data today.

INCLUDE Data Hub

Quick Start Guide

Videos and instructional guides to set you up for success in the hub.

Quick Start Guide

Integrate Your Data

Learn how to initiate the data ingest process and meet with our team to walk you through the process.

Data Contributor Guide

Our Core Teams

Expertise Driving Discovery

INCLUDE Data Coordinating Center

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 multiple leaders.

Primary Button

Administrative & Outreach Core

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.