RECRUITING

CureDuchenne Link®: A Resource for Research

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

CureDuchenne link is a data hub comprised of integrated biospecimens, clinical data, and self- and/or caregiver-reported information from participants. Anyone over 4 weeks old who has been diagnosed with DMD or BMD or who is a carrier of DMD or BMD can join. Parents or legal guardians can sign up their child(ren).

Official Title

CureDuchenne Link®: A Resource to Support Research Studies in Duchenne and Becker Muscular Dystrophy (DMD/BMD)

Quick Facts

Study Start:2021-07-09
Study Completion:2031-07-09
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04972604

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:4 Weeks
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. Any of the following are true:
  2. 1. Currently has a confirmed diagnosis of DMD/BMD based on genetic testing, muscle biopsy, or clinical diagnosis.
  3. 2. Currently has a confirmed diagnosis of carrier status for DMD/BMD based on genetic testing.
  4. 2. Parent/guardian (for minor participants) or participant gives informed consent and/or assent as required by local regulations.
  5. 3. Is age 4 weeks or older at the time of consent.
  1. 1. Is a foster child or ward of the state.
  2. 2. Is a prisoner.

Contacts and Locations

Study Contact

Erica Rudoff
CONTACT
888-235-4655
support@cureduchennelink.org

Principal Investigator

Debra Miller
PRINCIPAL_INVESTIGATOR
CureDuchenne

Study Locations (Sites)

Arkansas Children's Hospital
Little Rock, Arkansas, 72202
United States
CureDuchenne
Newport Beach, California, 92660
United States
Children's Hospital of Orange County
Orange, California, 92868
United States
Rare Disease Research
Atlanta, Georgia, 30329
United States
University of Iowa
Iowa City, Iowa, 52242
United States
Kansas University Clinical Research Center
Fairway, Kansas, 66205
United States
Corewell Health
Grand Rapids, Michigan, 49503
United States
Rare Disease Research Center
Hillsborough, North Carolina, 27278
United States
Penn State Health
Hershey, Pennsylvania, 17033
United States
Neurology Rare Disease Center
Denton, Texas, 76208
United States

Collaborators and Investigators

Sponsor: CureDuchenne

  • Debra Miller, PRINCIPAL_INVESTIGATOR, CureDuchenne

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 Date2021-07-09
Study Completion Date2031-07-09

Study Record Updates

Study Start Date2021-07-09
Study Completion Date2031-07-09

Terms related to this study

Keywords Provided by Researchers

  • Carrier
  • DMD
  • BMD

Additional Relevant MeSH Terms

  • Duchenne Muscular Dystrophy
  • Becker Muscular Dystrophy