RECRUITING

A Study to Learn More About the Long-Term Safety of BIIB141 (Omaveloxolone) in Participants With Friedreich's Ataxia Who Are Prescribed it by Their Own Doctors

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

In this study, researchers will learn more about the safety of BIIB141, also known as omaveloxolone or SKYCLARYS®. This is a drug available for doctors to prescribe for people with Friedreich's Ataxia, also known as FA. This is known as an "observational" study, which collects health information about study participants without changing their medical care. Participants for this study will be found using a group called the Friedreich's Ataxia Global Clinical Consortium (FA GCC) UNIFIED Natural History Study (UNIFAI). The FA-GCC is a group of study research centers that helps provide clinical care for FA patients and also helps researchers learn more about how FA affects patients over a long time. The main objective of this study is to collect safety information in participants with FA from UNIFAI. Some of the participants in this study will be prescribed BIIB141 for the first time by their own doctors. Some of the participants will have started taking BIIB141 after joining UNIFAI, but less than 12 months before joining this study. The main questions researchers want to answer in this study are: * How many participants had serious adverse events (SAEs)? An adverse event is considered serious when it results in death, is life-threatening, causes lasting problems, or requires hospital care. * How many participants had adverse events (AEs) related to heart failure or liver damage caused by the drug? Researchers will also learn more about : • Why and when participants stopped treatment, left the study, or took more of the drug than was prescribed This study will be done as follows: * Participants will be screened to check if they can join the study. * After joining the study, the participants who had never started BIIB141 treatment before must start it within 6 months. Otherwise, all participants will take BIIB141 throughout this study as prescribed by their own doctor. * During the study, each participant's doctor will decide how often the participant visits the study research center to check on their health. This will be based on the doctor's own clinical judgment and what is recommended by the drug's label. * Data from the participants' regular visits to their doctor will be collected at 1 month, 2 months, 3 months, 6 months, 12 months, 24 months, 36 months, 48 months, and 60 months. * Each participant will be in the study for up to 5 years.

Official Title

An Observational, Multinational, Post-Marketing Registry of Omaveloxolone-Treated Patients With Friedreich's Ataxia

Quick Facts

Study Start:2024-12-12
Study Completion:2029-10-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06623890

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:16 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Documented diagnosis of FA, including confirmation via genetic testing.
  2. * Participants aged 16 years and older at initiation of omaveloxolone treatment.
  3. * Initiated omaveloxolone treatment as per an approved label less than 12 months prior to enrollment in this study
  4. * Prior to enrollment, maintained omaveloxolone treatment with no discontinuation of more than 60 days
  5. * Actively on treatment at the time of enrollment in this study
  6. * Treating physician is the study site principal investigator or sub-investigator
  7. * Study site confirms ability to provide required baseline data through medical record review, UNIFAI database, or other site-collected data
  8. * Enrolled in the UNIFAI study prior to initiation of omaveloxolone treatment
  1. * Received off-label prescription of omaveloxolone at any time.
  2. * Previously enrolled in a clinical trial of omaveloxolone.
  3. * Participating in a blinded interventional trial at the time of enrollment in the study; participants may participate in other clinical trials after baseline data are collected.

Contacts and Locations

Study Contact

Study Director
CONTACT
866-633-4636
clinicaltrials@biogen.com
Global Biogen Clinical Trial Center
CONTACT
clinicaltrials@biogen.com

Principal Investigator

Medical Director
STUDY_DIRECTOR
Biogen

Study Locations (Sites)

UCLA Neurology
Los Angeles, California, 90095
United States
University of Colorado
Aurora, Colorado, 80045
United States
University of Florida
Gainesville, Florida, 32608
United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104
United States

Collaborators and Investigators

Sponsor: Biogen

  • Medical Director, STUDY_DIRECTOR, Biogen

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 Date2024-12-12
Study Completion Date2029-10-01

Study Record Updates

Study Start Date2024-12-12
Study Completion Date2029-10-01

Terms related to this study

Additional Relevant MeSH Terms

  • Friedreich Ataxia