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Application of a Systematic Developmental Assessment to a Novel Population: Infants With Rare Genetic Disorders
Sponsor: Boston Children's Hospital
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.
Key Details
Gender
All
Age Range
Any - 4 Years
Study Type
OBSERVATIONAL
Enrollment
150
Start Date
2019-08-26
Completion Date
2025-12-01
Last Updated
2024-06-21
Healthy Volunteers
No
Conditions
Locations (1)
Boston Children's Hospital
Boston, Massachusetts, United States