New tool aims to measure health in down syndrome for the first time

NCT ID NCT04631237

Completed Knowledge-focused Sponsor: Massachusetts General Hospital Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jun 27, 2026

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.

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

Down syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

DOWN SYNDROME HEALTH, SUBJECTIVE

Contacts and locations

Locations

Massachusetts General Hospital

Boston, Massachusetts, 02114, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.