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NIH study aims to sharpen research skills by evaluating kids with genetic disorders

NCT ID NCT02769949

Knowledge-focused Sponsor: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 26, 2026 · Last updated Sep 01, 2026 · Updated 6 times

Summary

This completed study at the NIH enrolled 96 children with known or suspected genetic disorders, including autism and Fragile X syndrome. The main goal was to give clinic staff hands-on experience and explore new research ideas. Participants received medical exams, lab tests, and imaging, but no experimental treatment was given.

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 study could help researchers better understand rare genetic conditions and develop new ways to study them.
What could go wrong
This was a small, observational training study, not a treatment trial. It was not designed to test any therapy or cure.

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

Study facts

What this study's own registry entry says, in plain language.

Participants

96 people

The number who actually took part.

Started

May 2016

Finished

Jul 2025

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Community dwelling participants with genetic disorders

Ages

1 year to 99 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

* INCLUSION CRITERIA: * Subjects of any age with known or suspected genetic disorder * For relatives of subjects with a genetic disorder: Subject is a family member of the proband EXCLUSION CRITERIA: -Presence of a medical, psychiatric, or social condition which, in the opinion of the investigator, would place undue burden on the subject, NIH resources, or increase risk of participation

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Conditions

The condition(s) this trial relates to.

autism spectrum disorder autism spectrum disorder 1 fragile X syndrome hereditary disease learning disability

As listed by the trial registrant

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

Asperger disorder Autism spectrum disorder Developmental delay Fragile X syndrome Genetic disorder

Contacts and locations

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

More trials for these conditions

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