New tool aims to measure health in down syndrome for the first time
NCT ID NCT04631237
First seen Oct 31, 2025 · Last updated Jun 19, 2026 · Updated 28 times
Summary
This study created a new questionnaire called the Down Syndrome Health Instrument (DHI) to measure health in people with Down syndrome. Researchers worked with caregivers, individuals with Down syndrome, and experts to develop and test the tool. Over 750 participants took part in surveys and interviews. The goal is to provide a way to track health outcomes in this population, which has been lacking.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Locations
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Massachusetts General Hospital
Boston, Massachusetts, 02114, United States
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this could provide a reliable way to measure health in Down syndrome, helping to identify care gaps and improve future treatments.
What could go wrong
This is an observational study focused on developing a measurement tool, not testing a treatment. The instrument may need further validation before widespread use.
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.