Can a second treatment help kids with SMA who stalled after gene therapy?

NCT ID NCT05861999

First seen Jun 27, 2026 · Last updated Aug 12, 2026 · Updated 4 times

Summary

This study tests whether adding risdiplam, a daily oral medicine, can help children under 2 with spinal muscular atrophy (SMA) who stopped getting better or started declining after receiving gene therapy. The study will enroll 28 children and measure changes in motor skills over 72 weeks. The goal is to see if risdiplam can improve movement and function beyond what gene therapy alone achieved.

What this could mean

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

Active substance
Risdiplam (a liquid medicine taken by mouth)
What this could lead to
If it works, this could offer a way to help children with SMA who have stopped improving after gene therapy regain some motor function.
What could go wrong
This is a small, early-phase study with only 28 children, so results may not apply to everyone. Risdiplam may cause side effects, and it is not known if it will reverse the plateau or decline.

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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

  • Charité - Universitätsmedizin Berlin SPZ Abteilung Neuropaediatrie

    RECRUITING

    Berlin, 13353, Germany

  • Children'S Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Children's Healthcare of Atlanta Center for Advanced Pediatrics

    RECRUITING

    Atlanta, Georgia, 30329-2309, United States

  • Children's Hospital of Colorado

    RECRUITING

    Aurora, Colorado, 80045, United States

  • Children's Hospital of the King's Daughter

    WITHDRAWN

    Norfolk, Virginia, 23510, United States

  • Great Ormond Street Hospital For Children

    RECRUITING

    London, WC1N 3JH, United Kingdom

  • Helen DeVos Children's Hospital at Spectrum Health

    RECRUITING

    Grand Rapids, Michigan, 49503, United States

  • Instytut Pomnik Centrum Zdrowia Dziecka

    RECRUITING

    Warsaw, 04-730, Poland

  • Schneider Children's Medical Center of Israel

    RECRUITING

    Petah Tikva, 4920235, Israel

  • Sidra Medicine

    RECRUITING

    Al Rayyan, Qatar

  • Soroka Medical Center

    RECRUITING

    Beersheba, 8410101, Israel

  • Sourasky MC, Dana-Dwek Children's Hospital

    RECRUITING

    Tel Aviv, 6423906, Israel

  • Stanford Univ Medical Center

    RECRUITING

    Palo Alto, California, 94304, United States

  • UKGM Standort Gießen

    RECRUITING

    Giessen, 35392, Germany

  • University of Arkansas for Medical Sciences

    RECRUITING

    Little Rock, Arkansas, 72103, United States

  • University of Florida Pediatrics

    RECRUITING

    Gainesville, Florida, 32610, United States

  • University of Texas Southwestern Medical Center

    RECRUITING

    Dallas, Texas, 75390, United States

  • Uniwersyteckie Centrum Kliniczne

    RECRUITING

    Gda?sk, 80-952, Poland

  • Valley Children's Hospital

    RECRUITING

    Madera, California, 93636, United States

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