RECRUITING

Angelman Syndrome Natural History Study

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 goal of this study is to conduct a prospective, longitudinal natural history study of children and adults with Angelman Syndrome using investigator-observed and parent-reported outcome measures to obtain data that will be useful for future clinical trials.

Official Title

Angelman Syndrome Natural History Study

Quick Facts

Study Start:2018-08-01
Study Completion:2025-08
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04507997

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
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Molecular diagnosis of Angelman syndrome
  1. * Presence of another condition, unrelated to Angelman syndrome, that affects neurodevelopment

Contacts and Locations

Study Contact

Wen-Hann Tan, BMBS
CONTACT
617-355 6394
wen-hann.tan@childrens.harvard.edu
Batsheva Friedman, MA
CONTACT
617-355-2030
Batsheva.Friedman@childrens.harvard.edu

Principal Investigator

Wen-Hann Tan, BMBS
STUDY_CHAIR
Boston Children's Hospital

Study Locations (Sites)

Rady Children's Hospital, San Diego
San Diego, California, 92123
United States
Emory University School of Medicine
Atlanta, Georgia, 30322
United States
Rush University Children's Hospital
Chicago, Illinois, 60612
United States
Boston Children's Hospital
Boston, Massachusetts, 02115
United States
The Carolina Institute for Developmental Disabilities
Carrboro, North Carolina, 27510
United States
Monroe Carell Jr. Children's Hospital at Vanderbilt
Nashville, Tennessee, 37232
United States

Collaborators and Investigators

Sponsor: Boston Children's Hospital

  • Wen-Hann Tan, BMBS, STUDY_CHAIR, 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 Date2018-08-01
Study Completion Date2025-08

Study Record Updates

Study Start Date2018-08-01
Study Completion Date2025-08

Terms related to this study

Keywords Provided by Researchers

  • Angelman syndrome

Additional Relevant MeSH Terms

  • Angelman Syndrome