Study Overview

In this study, researchers will learn more about the effects and safety of BIIB141, also known as omaveloxolone or SKYCLARYS®. This drug has been approved, or made available for doctors to prescribe, for people with Friedreich’s Ataxia (FA) who are at least 16 years old. But, it is not yet available for children and teens with FA who are younger than 16 years old. The main objective of this study is to learn how BIIB141 works in the body and about its safety in children and teens who are 2 to 15 years old.

The main questions researchers want to answer in this study are:

  • How does BIIB141 affect the participants’ FA symptoms balance and stability?
  • How many participants have medical problems during the study?
  • Are there any changes in the participants’ overall health during the study?
  • Are there any changes in the participants’ heart health?
  • Are there any changes in how the participants move through puberty? Puberty is the time in someone’s life when their body changes from a child to an adult.
  • How does the body process BIIB141 in children and teens?

Study Details

There are 2 parts in this study. During Part 1, participants will take either BIIB141 or a placebo once a day for 52 weeks. After completion of Part 1, participants will be invited to participate in Part 2 during which all participants will take BIIB141 for up to 104 weeks.

Participants will be screened to check to see if they are eligible to join the study. Participants who meet all the eligibility criteria will be invited to begin the study at a designated study research center.

In Part 1, participants will take BIIB141 or the placebo in a study research center on Day 1, and then at in-person visits at Week 4, Week 12, Week 26, and Week 52. On all other days, they will take BIIB141 or the placebo at home. Part 1 lasts up to 52 weeks.  Participants will have up to 10 visits to their study research center and a phone call at Week 2.

During Part 2, participants from Part 1 will either continue taking BIIB141 or start it if they were taking the placebo. In Part 2, participants will have visits at Weeks 4, 8,12, 26, and every 26 weeks after that until they leave the study, and a phone call at Week 2. There will be a final phone call to check on the participants’ health 31 days after their last dose. Part 2 will last up to 104 weeks.

Each participant will be in the study up to approximately 3 years.

Key Inclusion Criteria for Part 1:

  • Diagnosed with genetically confirmed Friedreich’s ataxia (FA). This includes being homozygous for GAA repeat expansions, or having a GAA repeat expansion on one allele and a point mutation, deletion, or other non GAA repeat expansion mutation on the other allele.
  • Symptomatic for FA as reported by the participant and/or their parent or caregiver.
  • Children 7 to 15 must have an upright stability score on the modified Friedreich’s Ataxia Rating Scale (mFARS) between 10 and 34 at baseline.

Key Exclusion Criteria for Part 1:

  • Glycosylated hemoglobin A1C (HbA1c) > 11% (indicator of poorly controlled diabetes)
  • B-type natriuretic peptide (BNP) > 200 pg/mL at screening (measure of heart health)
  • Ejection fraction <40% as measured by echocardiogram at screening visit (measure of heart health)
  • Clinically significant cardiac disease except mild to moderate cardiomyopathy

Open Label Extension (Part 2) Eligibility:

  • Participants have completed Part 1 and no discontinuation criteria have been met.
  • Safety and tolerability data from Part 1 are supportive of continuation in the judgement of the investigator.

Other inclusion/exclusion criteria may apply.

Study Contact for More Information

To learn more about this study, email Biogen at clinicaltrials@biogen.com. Individuals located in the U.S. can also call the Biogen Clinical Trials Center at 866-633-4636.

Participating Study Locations

Institution NameLocationStatus

UCLA Neurology Outpatient Clinic at Westwood

USA

Los Angeles, CA

Not yet recruiting

Norman Fixel Institute for Neurological Diseases UF Health

USA

Gainesville, FL

Not yet recruiting

USF Health Morsani College of Medicine Department of Neurology

USA

Tampa, FL

Not yet recruiting

Children’s Hospital of Philadelphia Buerger Center

USA

Philadelphia, PA

Not yet recruiting

St Jude Children’s Research Hospital

USA

Memphis, TN

Not yet recruiting

Children’s Hospital of the King’s Daughters

USA

Norfolk, VA

Not yet recruiting

Murdoch Childrens Research Institute (MCRI)

Australia

Parkville, Victoria

Not yet recruiting

Universitätsklinikum Innsbruck

Austria

Innsbruck

Not yet recruiting

PSEG Centro de Pesquisa Clinica

Brazil

São Paulo

Not yet recruiting

L2 Ip – Instituto de Pesquisas Clinicas Ltda – ME

Brazil

Brasília, Distrito Federal

Not yet recruiting

University of Campinas (UNICAMP) School of Medical Sciences

Brazil

Campinas, São Paulo

Not yet recruiting

McGill University

Canada

Montreal, Quebec

Not yet recruiting

Rigshospitalet – Juliane Marie Centret (JMC) Copenhagen

Denmark

Copenhagen

Not yet recruiting

AP-HP – Hôpital Armand Trousseau

France

Paris

Not yet recruiting

CHU de Montpellier – Hôpital Arnaud de Villeneuve

France

Montpellier, Hérault

Not yet recruiting

Universitätsklinikum Aachen

Germany

Aachen

Not yet recruiting

UKGM – Universitätsklinikum Giessen und Marburg GmbH – Standort Gießen

Germany

Giessen

Not yet recruiting

UKE Hamburg

Germany

Hamburg

Not yet recruiting

CHI at Temple Street

Ireland

Dublin

Not yet recruiting

Fondazione IRCCS Istituto Neurologico Carlo Besta

Italy

Milano

Not yet recruiting

Ospedale Pediatrico Bambino Gesù IRCCS

Italy

Roma, Lazio

Not yet recruiting

IRCCS Eugenio Medea – Polo. Scientifico Veneto

Italy

Conegliano, Veneto

Not yet recruiting

Radboud Universitair Medisch Centrum

Netherlands

Nijmegen

Not yet recruiting

Hospital Sant Joan de Deu

Spain

Espluges De Llobregat

Not yet recruiting

Hospital Universitario La Paz – PPDS

Spain

Madrid

Not yet recruiting

University College London, Institute of Neurology

United Kingdom

London

Not yet recruiting

Sheffield Children’s Hospital

United Kingdom

Sheffield, South Yorkshire

Not yet recruiting

Explore the FA Drug Development Pipeline

FARA believes that there are many different approaches to treating Friedreich’s ataxia, and that it will require a cocktail approach of two or more treatments to slow, stop, reverse, and cure FA. Learn more about the approach behind this potential treatment and explore the other approaches that are in the FA Drug Development pipeline.