RECRUITING

Myotonic Dystrophy Family Registry

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 Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that collects information on myotonic dystrophy (DM) to aid researchers in developing new, effective treatments and help identify participants for research studies and clinical trials.

Official Title

Myotonic Dystrophy Family Registry

Quick Facts

Study Start:2013-02
Study Completion:2030-02
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT02398786

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. * Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by clinical exam or genetic test)
  1. * Not diagnosed with DM, unaffected family members

Contacts and Locations

Study Contact

Sofia Olmos, PhD
CONTACT
415-800-7777
coordinator@myotonicregistry.org

Principal Investigator

Tanya Stevenson, EdD, MPH
STUDY_CHAIR
Myotonic Dystrophy Foundation

Study Locations (Sites)

Myotonic Dystrophy Foundation
Oakland, California, 94612
United States

Collaborators and Investigators

Sponsor: Myotonic Dystrophy Foundation

  • Tanya Stevenson, EdD, MPH, STUDY_CHAIR, Myotonic Dystrophy Foundation

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 Date2013-02
Study Completion Date2030-02

Study Record Updates

Study Start Date2013-02
Study Completion Date2030-02

Terms related to this study

Additional Relevant MeSH Terms

  • Myotonic Dystrophy
  • Congenital Myotonic Dystrophy
  • Myotonic Dystrophy 1
  • Myotonic Dystrophy 2
  • Dystrophia Myotonica
  • Dystrophia Myotonica 1
  • Dystrophia Myotonica 2
  • Myotonia Dystrophica
  • Myotonic Dystrophy, Congenital
  • Myotonic Myopathy, Proximal
  • PROMM (Proximal Myotonic Myopathy)
  • Proximal Myotonic Myopathy
  • Steinert Disease
  • Steinert Myotonic Dystrophy
  • Steinert's Disease
  • Myotonia Atrophica