Application of a Systematic Developmental Assessment to a Novel Population: Infants With Rare Genetic Disorders
Completed
Conditions studied: Genetic Disease, Genetic Syndrome, Genetic Predisposition to Disease, Development, Infant, Development, Child
In brief
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.
Key facts
- Study ID
- NCT03967743
- Run by
- Boston Children's Hospital
- People needed
- 43
- Starts
- 2019-08-26
- Expected to finish
- 2026-05-01
- Last updated by the study team
- 2026-06-02
Who can join
Age: any, up to 4. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Eligible patients are infants under 4 years of age with genetic disorders undergoing developmental surveillance in the NICU GraDS program.
You may not qualify if…
- Children 4 years of age or older will be excluded.
Where it is running
- Boston Children's Hospital — Boston, Massachusetts, United States
Full record on ClinicalTrials.gov
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