What is research?
Research is when a person carefully and systematically studies something to learn new information about it.
Is there research that focuses on people with Down syndrome?
A wide variety of research focuses on many different aspects of Down syndrome. For people with Down syndrome, the impact of research can be seen in the issuing of specific medical and educational guidelines, more inclusion in society, and increased lifespan.
Should I participate in research?
Participating in a research study is one way you can contribute to medical and social advances for people with Down syndrome. The answers to the questions below may help you decide if a particular study is right for you.
What is the purpose of the study?
What do you have to do if you participate in the study?
How much time will the study take?
What are the benefits of participating?
What are the risks of participating?
The risks of participating in a study depend on what the study involves. Taking an anonymous survey about your favorite vegetables has very different risks than undergoing an invasive medical procedure. You should understand the risks of the study before you agree to participate.
How can I learn about research studies that are enrolling?
The National Institutes of Health has created a registry called DS-Connect. One of the aims of DS-Connect is to connect people with Down syndrome and their families to researchers and health care providers.
On a local level, organizations like DSANEO often help advertise research studies through newsletters and local media. Additionally, researchers at the Cleveland Clinic are creating an email list of people who are interested in learning about local research opportunities for people with Down syndrome. If you are interested in being added to the list, please email koenigk@ccf.org.
Research Organizations
https://medschool.cuanschutz.edu/linda-crnic-institute
Research Opportunities
All research posted through the Down Syndrome Association of Northeast Ohio has undergone rigorous acceptance standards from their sponsoring institutions including but not limited to review by their IRB committee. Under FDA regulations, an IRB is an appropriately constituted group that has been formally designated to review and monitor biomedical research involving human subjects. In accordance with FDA regulations, an IRB has the authority to approve, require modifications In (to secure approval) or disapprove research.
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- The LuMind IDSC Foundation (LuMind IDSC) is a nonprofit organization that accelerates research to increase availability of therapeutic, diagnostic, and medical care options and empowers the largest online community of individuals with Down syndrome and their families with education, resources, connections, and support. Learn about current studies by clicking HERE