New study maps developmental milestones in babies with rare genetic conditions

NCT ID NCT03967743

First seen Jun 05, 2026 · Last updated Jun 16, 2026 · Updated 5 times

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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Contacts and locations

Locations

  • Boston Children's Hospital

    Boston, Massachusetts, 02115, United States

Conditions

Explore the condition pages connected to this study.