RECRUITING

Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study

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Conditions

Friedreich AtaxiaRare DiseaseNeuro-degenerative diseaseAtaxiaNeurodegenerative DiseasesNeurologic ManifestationsGenetic Diseases, Inborn

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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 project is a global, multicenter, prospective, longitudinal, observational natural history study that can be used to understand the disease progression and support the development of safe and effective drugs and biological products for Friedreich ataxia.

Official Title

Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study

Quick Facts

Study Start:2023-06-28
Study Completion:2048-01-28
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06016946

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:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. Both males and females of any age
  2. 2. Individuals with Friedreich ataxia (FA): Participants that meet genetically confirmed diagnosis of Friedreich ataxia
  3. 3. Written informed consent provided
  4. 1. Informed consent must be obtained for all participants
  5. 2. For underage participants, they and the parent/ legally authorized representative have to sign the informed consent form, child assent (if applicable)
  6. 3. Persons who are not legally competent require the informed consent of their legally authorized representative
  1. 4. Unable or unwilling to provide informed consent
  2. 5. Acute or ongoing medical or other conditions that would interfere with the conduct and assessments of the study
  3. 6. For any reason in the opinion of the investigator, participant would be unlikely or unable to comply with study protocol requirements.

Contacts and Locations

Study Contact

Cait Monette
CONTACT
16513291892
cait.monette@cureFA.org
Jennifer Farmer
CONTACT
14848796160
jen.farmer@cureFA.org

Principal Investigator

David Lynch, MD
PRINCIPAL_INVESTIGATOR
Children's Hospital of Philadelphia
Jorg B Schulz, Prof
PRINCIPAL_INVESTIGATOR
University Hospital, Aachen

Study Locations (Sites)

UCLA Ataxia Center
Los Angeles, California, 90095
United States
University of Colorado
Denver, Colorado, 80045
United States
University of Florida - Neurology
Gainesville, Florida, 32610
United States
USF Ataxia Research Center
Tampa, Florida, 33612
United States
Emory University Hospital - Neurology
Atlanta, Georgia, 30329
United States
University of Iowa, Stead Family Children's Hospital
Iowa City, Iowa, 52242
United States
Ohio State University - Neurology
Columbus, Ohio, 43221
United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104
United States
St. Jude Children's Research Hospital
Memphis, Tennessee, 38105
United States

Collaborators and Investigators

Sponsor: Friedreich's Ataxia Research Alliance

  • David Lynch, MD, PRINCIPAL_INVESTIGATOR, Children's Hospital of Philadelphia
  • Jorg B Schulz, Prof, PRINCIPAL_INVESTIGATOR, University Hospital, Aachen

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 Date2023-06-28
Study Completion Date2048-01-28

Study Record Updates

Study Start Date2023-06-28
Study Completion Date2048-01-28

Terms related to this study

Keywords Provided by Researchers

  • Rare Disease
  • Neuro-degenerative disease
  • Ataxia
  • Neurodegenerative Diseases
  • Neurologic Manifestations
  • Genetic Diseases, Inborn

Additional Relevant MeSH Terms

  • Friedreich Ataxia