RECRUITING

ASXL-Related Disorders Registry

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Conditions

Bohring-Opitz SyndromeASXL1 Gene MutationShashi-Pena SyndromeASXL2 Gene MutationBainbridge-Ropers SyndromeASXL3 Gene Mutation

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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

A registry focused on the natural history, management and treatment of patients with Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2) and Bainbridge-Ropers Syndrome (ASXL3).

Official Title

Clinical Registry for ASXL-Related Disorders and Disorders of Chromatin Remodeling

Quick Facts

Study Start:2017-09-20
Study Completion:2037-09
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03303716

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. * Clinical or molecular diagnosis of an ASXL related disorder
  1. * No clinical or molecular diagnosis of an ASXL related disorder

Contacts and Locations

Study Contact

Bianca Russell, MD
CONTACT
(310) 206-6581
ASXL-CHROMATIN-REGISTRY@mednet.ucla.edu

Principal Investigator

Wen-Hann Tan, BMBS
PRINCIPAL_INVESTIGATOR
Boston Children's Hospital
Loren Pena, MD, PhD
PRINCIPAL_INVESTIGATOR
Children's Hospital Medical Center, Cincinnati
Vandana Shashi, MD, PhD
PRINCIPAL_INVESTIGATOR
Duke University
Bianca Russell, MD
PRINCIPAL_INVESTIGATOR
University of California, Los Angeles

Study Locations (Sites)

University of California, Los Angeles
Los Angeles, California, 90095
United States

Collaborators and Investigators

Sponsor: University of California, Los Angeles

  • Wen-Hann Tan, BMBS, PRINCIPAL_INVESTIGATOR, Boston Children's Hospital
  • Loren Pena, MD, PhD, PRINCIPAL_INVESTIGATOR, Children's Hospital Medical Center, Cincinnati
  • Vandana Shashi, MD, PhD, PRINCIPAL_INVESTIGATOR, Duke University
  • Bianca Russell, MD, PRINCIPAL_INVESTIGATOR, University of California, Los Angeles

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 Date2017-09-20
Study Completion Date2037-09

Study Record Updates

Study Start Date2017-09-20
Study Completion Date2037-09

Terms related to this study

Additional Relevant MeSH Terms

  • Bohring-Opitz Syndrome
  • ASXL1 Gene Mutation
  • Shashi-Pena Syndrome
  • ASXL2 Gene Mutation
  • Bainbridge-Ropers Syndrome
  • ASXL3 Gene Mutation