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Hope for muscle strength: experimental drug tested for Long-Term use in rare muscular dystrophy

NCT ID NCT07678775

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 01, 2026 · Last updated Jul 02, 2026 · Updated 1 time

Summary

This study tests the long-term safety and effectiveness of an experimental drug called BBP-418 (ribitol) in people with limb-girdle muscular dystrophy type 2I/R9, a rare genetic muscle-weakening disease. Participants who completed a previous study will take BBP-418 orally twice daily for up to 36 months. Researchers will monitor side effects and measure changes in muscle function, walking speed, and breathing capacity.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
BBP-418 (ribitol)
What this could lead to
If successful, this could provide a long-term treatment option to slow disease progression and improve muscle function in people with LGMD2I/R9.
What could go wrong
This is an extension study, so participants already know the drug is safe enough to continue. However, long-term side effects are still being monitored, and the drug may not work for everyone.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Phase

Phase 3

Large-scale testing in a bigger group. Usually the last step before a treatment can be approved.

Participants

About 107 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jun 2026

Expected to finish

Oct 2030

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Completed Study MLB-01-005 on study drug through the final clinic visit (Month 36 or another qualifying end-of-study visit as determined by the Sponsor). * The participant (or parent/guardian) who signs the ICF understands the study procedures and agrees to participate in the study by giving informed consent (or assent, if \<18 years of age). * Is willing and able to complete all study procedures according to the Schedule of Assessments. * A WOCBP or a nonsterile male participant must be willing to use an acceptable method of contraception from the time of consent through 30 days after the last dose of study drug in this study. Exclusion Criteria: * Has developed clinically significant concomitant disease that would, in the Investigator's opinion, be likely to unfavorably impact study participation, including: * Any significant concomitant medical condition, including psychiatric, cardiac, renal, pulmonary, hepatic, or endocrine disease other than that associated with LGMD2I/R9 * Any other significant laboratory, vital sign, ECG abnormality, clinical history, or finding * Is pregnant (based on the Baseline / Day 1 pregnancy test result) and/or breastfeeding or planning to conceive children within the projected duration of the study through 30 days after the last dose of study drug in this study. * Has active suicidal ideation, defined as having a suicide ideation score of 4 (Active Suicidal Ideation with Some Intent to Act, without Specific Plan) or 5 (Active Suicidal Ideation with Specific Plan and Intent) on the C-SSRS at Baseline / Day 1.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • Arkansas Children's Hospital

    Little Rock, Arkansas, 72202, United States

  • Charité Universitätsmedizin Berlin and Max Delbrück Center

    Berlin, Germany

  • Children's Hospital of the Kings Daughters

    Norfolk, Virginia, 23510, United States

  • Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico

    Milan, Italy

  • Kennedy Krieger Institute

    Baltimore, Maryland, 21205, United States

  • Leids Universitair Medisch Centrum

    Leiden, Netherlands

  • Newcastle University - John Walton Muscular Dystrophy Research Centre

    Newcastle upon Tyne, United Kingdom

  • Rigshospitalet, Neuromuscular Clinic and Research Unit

    Copenhagen, Denmark

  • Royal Brisbane and Women's Hospital

    Brisbane, Australia

  • The Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania, 19104, United States

  • UCL Great Ormond Street Hospital

    London, United Kingdom

  • Universitetssykehuset Nord-Norge, Department of Neurology

    Tromsø, Norway

  • University of California Irvine Medical Center

    Orange, California, 92868, United States

  • University of Colorado Hospital (UCH) - Anschutz Medical Campus

    Aurora, Colorado, 80045, United States

  • University of Florida Health Center for Pediatric Neuromuscular and Rare Diseases

    Gainesville, Florida, 32608, United States

  • University of Iowa Stead Family Children's Hospital

    Iowa City, Iowa, 52242, United States

  • University of Kansas Medical Center (KUMC)

    Kansas City, Kansas, 66160, United States

  • University of Minnesota Medical School

    Minneapolis, Minnesota, 55455, United States

  • University of Pennsylvania

    Philadelphia, Pennsylvania, 19104, United States

  • Washington University School of Medicine

    St Louis, Missouri, 63110, United States

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