RECRUITING

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

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

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

Quick Facts

Study Start:2019-08-26
Study Completion:2025-12-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03967743

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified to 4 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD
Inclusion CriteriaExclusion Criteria
  1. * Eligible patients are infants under 4 years of age with genetic disorders undergoing developmental surveillance in the NICU GraDS program.
  1. * Children 4 years of age or older will be excluded.

Contacts and Locations

Study Contact

Monica H Wojcik, MD
CONTACT
617-355-5355
Monica.Wojcik@childrens.harvard.edu
Jonathan Litt, MD
CONTACT
jonathan.litt@childrens.harvard.edu

Principal Investigator

Monica Wojcik, MD
PRINCIPAL_INVESTIGATOR
Boston Children's Hospital

Study Locations (Sites)

Boston Children's Hospital
Boston, Massachusetts, 02115
United States

Collaborators and Investigators

Sponsor: Boston Children's Hospital

  • Monica Wojcik, MD, PRINCIPAL_INVESTIGATOR, Boston Children's Hospital

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2019-08-26
Study Completion Date2025-12-01

Study Record Updates

Study Start Date2019-08-26
Study Completion Date2025-12-01

Terms related to this study

Keywords Provided by Researchers

  • Genetics
  • Infant Development

Additional Relevant MeSH Terms

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