New study maps developmental milestones in babies with rare genetic conditions

NCT ID NCT03967743

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.

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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.

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.