RECRUITING

Long-Term Development of Muscular Dystrophy Outcome Assessments

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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

This is a 24-month, observational study of up to 1000 participants with Limb Girdle Muscular Dystrophy (LGMD), Myotonic Dystrophy Type 2 (DM2), and late onset Pompe disease (LOPD).

Official Title

Long-Term Development of Muscular Dystrophy Outcome Assessments (GRASP-01-005)

Quick Facts

Study Start:2023-10-18

Study Completion:2029-05-01

Study Type:Not specified

Phase:Not Applicable

Enrollment:Not specified

Status:RECRUITING

Study ID

NCT05989620

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:6 Years to 50 Years

Sexes Eligible for Study:ALL

Accepts Healthy Volunteers:Not specified

Standard Ages:CHILD, ADULT

Inclusion Criteria	Exclusion Criteria
1. Age between 6-50 years at enrollment 2. Clinically affected (defined as weakness on bedside evaluation in a pattern consistent with proximal weakness) 3. Genetic confirmation of a LGMD, DM2, or LOPD 4. FVC above 30% of predicted	1. Any other illness that would interfere with the ability to undergo safe testing or would interfere with interpretation of the results in the opinion of the site investigator 2. Participation in a clinical trial receiving an investigational product

Contacts and Locations

Study Contact

Jennifer Raymond

CONTACT

804-828-6318

Jennifer.Raymond@vcuhealth.org

Ruby Langeslay

CONTACT

Ruby.Langeslay@vcuhealth.org

Principal Investigator

Nicholas Johnson, MD

PRINCIPAL_INVESTIGATOR

Virginia Commonwealth University

Study Locations (Sites)

Virginia Commonwealth University

Richmond, Virginia, 23298

United States

Collaborators and Investigators

Sponsor: Virginia Commonwealth University

Nicholas Johnson, MD, PRINCIPAL_INVESTIGATOR, Virginia Commonwealth University

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 Date2023-10-18

Study Completion Date2029-05-01

Study Record Updates