RecruitingNCT03967743

Application of a Systematic Developmental Assessment to a Novel Population: Infants With Rare Genetic Disorders

Sponsor

Boston Children's Hospital

Enrollment

150 participants

Start Date

Aug 26, 2019

Study Type

OBSERVATIONAL

Conditions

Genetic Predisposition to Disease Genetic Disease Development, Infant Development, Child Genetic Syndrome

Summary

The main objective of this study is to apply a well-established model of developmental surveillance (which evolved to characterize the outcomes of very low birth weight infants) to infants with genetic disorders. A novel clinical model for infants with rare genetic disorders has been created as a joint initiative between the Division of Newborn Medicine's NICU Growth and Developmental Support Programs (NICU GraDS) program and the Division of Genetics at Boston Children's Hospital (BCH). This study plans to enroll patients with genetic syndromes seen in this clinic into a prospective, longitudinal study in order to characterize their developmental profiles and needs.

Eligibility

Max Age: 4 Years

Plain Language Summary

Simplified for easier understanding

This clinical trial is studying a new treatment for people with development, child, development, infant, and other related conditions. The study is currently recruiting participants at 1 location. People eligible for this study include up to age 4 Years.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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