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

NCT03967743 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 150

Last updated 2024-06-21

No results posted yet for this study

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.

Conditions

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

Sponsors & Collaborators

Principal Investigators

  • Monica Wojcik, MD · Boston Children's Hospital

Eligibility

Max Age
4 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2019-08-26
Primary Completion
2025-06-01
Completion
2025-12-01

Countries

  • United States

Study Locations

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Entities

Diseases
Companies

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT03967743 on ClinicalTrials.gov