Data that Drives Discovery in Down Syndrome Research

Making it easier for scientists and the Down syndrome community to work together.

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Seamless Resource Access

Powering discovery with open, integrated data.

We unite Down syndrome resources for researchers and families, accelerating collaboration and research.

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Doctor and patient with Down syndrome at an appointment

Man with Down syndrome holding a football

PROVEN IMPaCT

Metrics That Move Research

42

Studies

Research studies contributing data
15k+

Particpants

Individuals enrolled across the studies
68k+

Biospecimens

Biological samples collected from research participants
118TB

Data Files

Genomic sequences, imaging data, and other large datasets

From Data to Discovery

Empower Your Research

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INCLUDE Data Hub

Free, cloud-based platform designed to accelerate Down syndrome research by centralizing, harmonizing, and sharing data

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Experimental Models

The portal catalogs and shares information about cellular and animal models of Down syndrome

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INCLUDE DS-Biorepository

A coordinated system for collecting, storing, and distributing biological samples from individuals with Down syndrome to support research.

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DS-Connect Registry

A secure registry that allows individuals with Down syndrome and their families to participate in research, connect with studies, and contribute health information.

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INCLUDE CDP

A research initiative that brings together investigators, institutions, and communities to accelerate discoveries and improve health outcomes for people with Down syndrome.

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Data Science Training

An immersive training program that equips researchers with basic data science skills.

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Explore the Data Hub

Unified Data, Faster Insights

The INCLUDE DCC has created a cloud-based, open, digital platform to easily access and share Down syndrome resources to maximize and accelerate research.

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Researchers and Families on the Impact of Our Work

“It gives us the opportunity to collaborate across distances and individual niche research areas.”
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“INCLUDE Data Hub is incredibly valuable; it gives us the opportunity to collaborate across distances and individual niche research areas.”

Cole Dahlstrom is a PhD Candidate in Veterinary Medicine and Biomedical Sciences at Texas A&M University, where his research focuses on orthopedics and musculoskeletal morbidities, with an emphasis on identifying therapeutic solutions. His work investigates skeletal co-occurring conditions in individuals with Down syndrome, contributing to a better understanding of how these conditions impact health and mobility across the lifespan.

As a first-year scholar in the 2022 Data Science for Diverse Scholars in Down Syndrome Research (DS3) course, Cole actively engaged with the INCLUDE Data Coordinating Center and Data Hub to build foundational skills in data science and apply them to Down syndrome research. Access to centralized, high-quality datasets and training through the INCLUDE DCC has supported his ability to explore complex, multidisciplinary questions and strengthened his approach to data-driven research. Through these resources, Cole has been able to integrate large-scale data analysis into his work, accelerating discovery and fostering collaboration within the Down syndrome research community.

Cole Dahlstrom
PhD Candidate

Researchers and Families on the Impact of Our Work

Medical research is one of the most powerful ways..”
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“INCLUDE DCC has the potential to be a real lifeline for families like mine—bringing scientists and the medical community together, opening doors to support, and making sure no family feels left out. Medical research is one of the most powerful ways to ensure state-of-the-science interventions become accessible to people with Down syndrome, turning hope into real, meaningful care for our loved ones.”

Linda Roan is the Clinical Outreach Liaison at the Linda Crnic Institute for Down Syndrome and a strong advocate in the Down syndrome community. She supports the mission to improve the lives of people with Down syndrome through clinical research, outreach and community engagement, helping connect families with information about clinical trials and research opportunities.

As a mother of a daughter with Down syndrome who has directly experienced and participated in research, Linda brings invaluable lived experience to her outreach work and advocacy efforts, helping raise awareness and foster collaboration between families and researchers.

Linda Roan
Clinical Outreach Liaison

Researchers and Families on the Impact of Our Work

“The INCLUDE Data Hub is a great resource for those of us that want to look at real human Down syndrome data.”
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“The INCLUDE Data Hub is a great resource for those of us that want to look at real human Down syndrome data.”

Dr. Mary Allen is a Research Assistant Professor and Faculty Director of the Responsible Conduct of Research Education Program at the University of Colorado Boulder. She holds a B.A. in biochemistry from Spring Arbor University, an M.S. in cellular and molecular biology from the University of Wisconsin–Madison, and a Ph.D. in molecular, cellular, and developmental biology from the University of Colorado Boulder. Her research integrates experimental and computational approaches such as machine learning to investigate the role of RNA in disease and mechanisms of gene expression control.

Dr. Allen also trains biologists and bioinformaticians in the handling and analysis of large-scale datasets and serves as an instructor for the INCLUDE DCC’s Data Science for Diverse Scholars in Down Syndrome Research (DS3) course. Through this role, she supports the INCLUDE Data Coordinating Center and Data Hub by building research capacity, promoting responsible and effective data use, and strengthening the ethical and scientific rigor of multidisciplinary, inclusive research aimed at improving human health.

Mary Ann Allen, PhD
Research Associate Professor