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Crnic Institute

PROVEN IMPaCT

Metrics That Move Research

  • 8,500+
    Families represented via DS-Connect® contributions
  • 1.2M
    Records harmonized across platforms
  • 650+
    Registered researchers & clinicians
  • 95
    Institutions collaborating worldwide

How can individuals with Down syndrome support the INCLUDE DCC?

The best way for a person with Down syndrome to support the INCLUDE DCC is to participate in research. Researchers, clinicians and participants must work together to understand the causes of medical conditions more commonly experienced by people with Down syndrome. Participating in research is what helps scientists understand the causes of co-occurring conditions and figure out the best treatments. When enough people participate in these studies and enough data is acquired, we can learn more with the goal of improving health and the quality of life for all people with Down syndrome. You can view a list of clinical studies that currently need participants with Down syndrome. All featured studies have been reviewed and approved by an Institutional Review Board, The DS-Connect Research Review Committee and meet all of the criteria for informing eligible participants to take part in a study.

What is DS Connect, and how does it support research through the INCLUDE Program?

DS-Connect®: The Down syndrome registry is an online survey tool designed to collect demographic data and basic health information from individuals with Down syndrome (DS). The purposes of DS-Connect® are:To identify the various phenotypic manifestations of DS.
To identify individuals with DS who may be eligible for research studies or new clinical trials, based on specific information about their diagnosis and health history.
If you’d like to learn more about how to register with DS-Connect®, read the registry’s Frequently Asked Questions.  

How can I or my organization partner with the INCLUDE DCC to support the research?

INCLUDE DCC Partners are nationally known organizations and individuals committed to supporting the mission and work of the INCLUDE DCC. They are advocates, nonprofits and other groups working in Down syndrome research, support, healthcare and more. If you would like to learn more about how you or your organization can become a partner in research at the INCLUDE DCC, reach out to our team by emailing us at info@includedcc.org.

Cole Dahlstrom, PhD Candidate
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
Dr. Mary Ann Allen, PhD
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
Linda Roan
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
Cole Dahlstrom
PhD Candidate
Mary Ann Allen, PhD
Research Associate Professor
Linda Roan
Clinical Outreach Liaison
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