RECRUITING

Mitochondrial Myopathy Rating Scale

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 observational study is to develop and validate tools to measure disease course in patients with primary mitochondrial myopathy (PMM). The main aims of this study are: * Development, validation, and optimization of objective outcome measures for mitochondrial myopathy * Defining the natural history of mitochondrial myopathy Researchers will compare data from patients with primary mitochondrial myopathy to healthy controls. Data from healthy controls will also help define normative data for future studies. Participants will perform clinical exams of muscle strength and endurance and will complete surveys.

Official Title

Development and Validation of a Myopathy Rating Scale in Mitochondrial Disease

Quick Facts

Study Start:2017-03-24
Study Completion:2030-03-24
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05250375

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:0 Years to 100 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. Age 18 years or older
  2. Willing and able to provide informed consent
  3. Able to understand and follow study procedures
  4. Stable medical condition
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Katelynn Stanley, BS
CONTACT
267 426 4961
MitochondrialMyopathyResearch@chop.edu
Jean Flickinger, PT
CONTACT
267 426 4961
MitochondrialMyopathyResearch@chop.edu

Principal Investigator

Zarazuela Zolkipli-Cunningham, MBChB
PRINCIPAL_INVESTIGATOR
Children's Hospital of Philadelphia

Study Locations (Sites)

Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104
United States

Collaborators and Investigators

Sponsor: Children's Hospital of Philadelphia

  • Zarazuela Zolkipli-Cunningham, MBChB, PRINCIPAL_INVESTIGATOR, Children's Hospital of Philadelphia

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 Date2017-03-24
Study Completion Date2030-03-24

Study Record Updates

Study Start Date2017-03-24
Study Completion Date2030-03-24

Terms related to this study

Keywords Provided by Researchers

  • Mitochondrial Myopathy
  • Mitochondrial Disease
  • Healthy Volunteers
  • Natural History
  • Muscle Weakness
  • Fatigue
  • Outcome Measures

Additional Relevant MeSH Terms

  • Primary Mitochondrial Disease