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New study maps developmental milestones in babies with rare genetic conditions

NCT ID NCT03967743

Knowledge-focused Sponsor: Boston Children's Hospital 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study followed 43 infants with rare genetic disorders to track their development from birth up to age 3, with medical records reviewed until age 18. Researchers used a standard developmental assessment tool to understand each child's unique needs. The goal was to gather information, not to test a treatment, so there was no direct benefit to participants. Findings may help doctors better support these children in the future.

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

43 people

The number who actually took part.

Started

Aug 2019

Finished

May 2026

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

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

Who is studied

This is a prospective, registry study of infants under 4 years of age with genetic disorders being seen clinically in the NICU GraDS program.

Ages

Up to 4 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: * Eligible patients are infants under 4 years of age with genetic disorders undergoing developmental surveillance in the NICU GraDS program. Exclusion Criteria: * Children 4 years of age or older will be excluded.

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Conditions

The condition(s) this trial relates to.

developmental disability hereditary disease inherited disease susceptibility

As listed by the trial registrant

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

Development, child Development, infant Genetic disease Genetic predisposition to disease Genetic syndrome

Contacts and locations

Locations

  • Boston Children's Hospital

    Boston, Massachusetts, 02115, United States

More trials for these conditions

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