A Study to Learn About the Long-Term Safety of Higher Doses of Nusinersen (BIIB058) Given as Injections to Participants With Spinal Muscular Atrophy (SMA) Who Took Part in an Earlier Nusinersen Trial (ONWARD)

NCT ID: NCT04729907

Last Updated: 2025-02-03

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

ACTIVE_NOT_RECRUITING

Clinical Phase

PHASE3

Total Enrollment

115 participants

Study Classification

INTERVENTIONAL

Study Start Date

2021-04-19

Study Completion Date

2026-07-31

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

In this study, researchers will learn more about the use of nusinersen (BIIB058) in participants with spinal muscular atrophy (SMA). This study is an extension study and will enroll only those participants who have completed treatment in the parent study, 232SM203.

The main goal of the study is to learn about the long-term safety of nusinersen. The main questions researchers want to answer are:

* How many participants have adverse events and serious adverse events during the study?
* How do the results of electrocardiograms (ECGs), vital signs, and laboratory tests including blood and urine tests change after treatment?
* How many participants have a low platelet count after treatment?
* How many participants had a change in the time it took for their heart to recharge between beats after treatment?
* How does each participant's height and other measures of growth change after treatment?
* How much do the results of neurological exams that check movement, reflexes, and brain function change after treatment?

Researchers will also learn about the effect of nusinersen on mobility using various tests. They will study body movements, reflexes, balance, and coordination. They will also record if participants need help with breathing.

The 232SM302 study will be done as follows:

* Participants will be screened to check if they can join the study.
* Participants will receive their 1st dose of nusinersen in this study about 4 months after their final dose in the parent study.
* Each participant will receive nusinersen once every 4 months during the treatment period.
* Nusinersen will be given through a lumbar puncture, which involves injecting the drug into the fluid around the spinal cord in the lower back.
* The treatment period will last for up to 64 months (1921 days).
* There will be a follow-up safety period that lasts from 4 to 8 weeks.
* In total, participants will have up to 19 study visits. Participants will stay in the study for close to 6 years.

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

The primary objective of this study is to evaluate the long-term safety and tolerability of nusinersen administered intrathecally at higher doses to participants with spinal muscular atrophy (SMA) who previously participated in study 232SM203 (NCT04089566).

The secondary objective of this study is to evaluate the long-term efficacy of nusinersen administered intrathecally at higher doses to participants with SMA who previously participated in study 232SM203 (NCT04089566).

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Muscular Atrophy, Spinal

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Allocation Method

NON_RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

TREATMENT

Blinding Strategy

QUADRUPLE

Participants Caregivers Investigators Outcome Assessors

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

BIIB058 28 mg (Prior Maintenance Dose 28 mg)

Participants who received maintenance dose of 28 milligrams (mg) nusinersen in study 232SM203 (NCT04089566), will receive maintenance dose of 28 mg nusinersen, by intrathecal injection, on Day 1, followed by maintenance dose of 28 mg nusinersen, by intrathecal injection, every 4 months, up to Day 1921.

Group Type EXPERIMENTAL

Nusinersen

Intervention Type DRUG

Administered as specified in the treatment arm

BIIB058 50/28 mg (Prior Maintenance Dose 12 mg)

Participants who received maintenance dose of 12 mg nusinersen in study 232SM203 (NCT04089566), will receive loading dose of 50 mg nusinersen, by intrathecal injection, on Day 1, followed by maintenance dose of 28 mg nusinersen, by intrathecal injection, every 4 months, up to Day 1921.

Group Type EXPERIMENTAL

Nusinersen

Intervention Type DRUG

Administered as specified in the treatment arm

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

Nusinersen

Administered as specified in the treatment arm

Intervention Type DRUG

Other Intervention Names

Discover alternative or legacy names that may be used to describe the listed interventions across different sources.

BIIB058 Spinraza

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

* Completed the Day 302 visit in study 232SM203 (NCT04089566) in accordance with the study protocol

Exclusion Criteria

* Treatment with another investigational therapy or enrollment in another interventional clinical study
* Treatment with an approved therapy for SMA after the Day 302 Visit of Study 232SM203 (NCT04089566)
Minimum Eligible Age

2 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

Biogen

INDUSTRY

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

Medical Director

Role: STUDY_DIRECTOR

Biogen

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

Stanford University Medical Center

Sacramento, California, United States

Site Status

Children's Hospital Colorado

Aurora, Colorado, United States

Site Status

Ann & Robert H. Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

Site Status

The Johns Hopkins Hospital

Baltimore, Maryland, United States

Site Status

Boston Children's Hospital

Boston, Massachusetts, United States

Site Status

St. Jude Children's Research Hospital

Memphis, Tennessee, United States

Site Status

Children's Medical Center

Plano, Texas, United States

Site Status

Hospital de Clínicas de Porto Alegre

Porto Alegre, , Brazil

Site Status

Hospital das Clinicas - FMUSP

São Paulo, , Brazil

Site Status

London Health Sciences Centre (LHSC) - Children's Hospital

London, Ontario, Canada

Site Status

Hospital Luis Calvo Mackenna

Santiago, , Chile

Site Status

Clinica Las Condes

Santiago, , Chile

Site Status

Clinica MEDS La Dehesa

Santiago, , Chile

Site Status

Peking University First Hospital

Beijing, Beijing Municipality, China

Site Status

Guangzhou Woman and Children's Medical Center

Guangzhou, Guangdong, China

Site Status

The Children's Hospital of Zhejiang University School of Medicine

Hangzhou, Zhejiang, China

Site Status

Hospital Universitario San Ignacio

Bogotá, , Colombia

Site Status

Tallinn Children's Hospital

Tallinn, , Estonia

Site Status

Universitaetsklinikum Freiburg

Freiburg im Breisgau, Baden-Wurttemberg, Germany

Site Status

Universitaetsklinikum Giessen und Marburg GmbH

Giessen, Hesse, Germany

Site Status

Fondazione Serena Onlus - Centro Clinico Nemo

Milan, , Italy

Site Status

Fondazione Policlinico Universitario Agostino Gemelli IRCCS

Roma, , Italy

Site Status

Kurume University Hospital

Kurume-shi, Fukuoka, Japan

Site Status

Hyogo Medical University Hospital

Nishinomiya-shi, Hyōgo, Japan

Site Status

Tokyo Women's Medical University Hospital

Shinjuku-ku, Tokyo-To, Japan

Site Status

Saint George University Hospital Medical Center

Beirut, , Lebanon

Site Status

Instituto Nacional de Pediatria

Mexico City, Mexico City, Mexico

Site Status

Hospital Infantil de Mexico Federico Gomez

Mexico City, Mexico City, Mexico

Site Status

Antiguo Hospital Civil de Guadalajara Fray Antonio Alcalde

Guadalajara, , Mexico

Site Status

Russian Children Neuromuscular Center of Veltischev

Moskva, , Russia

Site Status

Regional Pediatric Clinical Hospital #1

Yekaterinburg, , Russia

Site Status

King Fahad Specialist Hospital

Dammam, , Saudi Arabia

Site Status

National Guard Health Affairs: King Abdulaziz Medical City

Jeddah, , Saudi Arabia

Site Status

King Faisal Specialist Hospital & Research Center

Riyadh, , Saudi Arabia

Site Status

Hospital Sant Joan de Deu

Esplugues Del Llobregat, Barcelona, Spain

Site Status

Hospital Universitario La Paz

Madrid, , Spain

Site Status

Hospital Universitari i Politecnic La Fe

Valencia, , Spain

Site Status

Kaohsiung Medical University Chung-Ho Memorial Hospital

Kaohsiung City, , Taiwan

Site Status

National Taiwan University Hospital

Taipei, , Taiwan

Site Status

Countries

Review the countries where the study has at least one active or historical site.

United States Brazil Canada Chile China Colombia Estonia Germany Italy Japan Lebanon Mexico Russia Saudi Arabia Spain Taiwan

Related Links

Access external resources that provide additional context or updates about the study.

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

2023-505637-27

Identifier Type: OTHER

Identifier Source: secondary_id

232SM302

Identifier Type: -

Identifier Source: org_study_id

More Related Trials

Additional clinical trials that may be relevant based on similarity analysis.

Spinraza in Adult Spinal Muscular Atrophy
NCT03709784 ACTIVE_NOT_RECRUITING