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

Launched by BOSTON CHILDREN'S HOSPITAL · May 28, 2019

Keywords

ClinConnect Summary

This clinical trial is looking at how to better understand the development of infants with rare genetic disorders. Researchers want to use a proven method that has been successful in tracking the growth and development of very low birth weight babies, and apply it to these infants. The goal is to gather information about their unique developmental needs and challenges, which can help in providing the right support and care.

To participate in the study, infants under 4 years old who have been diagnosed with a genetic disorder and are being monitored in a specific program at Boston Children's Hospital may be eligible. The study is currently recruiting participants and will follow them over time to see how they grow and develop. Parents can expect to be part of a supportive environment where their child's progress is closely observed, helping to create a clearer picture of how to assist children with rare genetic conditions.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Eligible patients are infants under 4 years of age with genetic disorders undergoing developmental surveillance in the NICU GraDS program.
• Exclusion Criteria:
• • Children 4 years of age or older will be excluded.