Experimental gene therapy targets rare muscle disease

NCT ID NCT05224505

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This early-stage trial tests a gene therapy called ATA-100 for people with LGMDR9, a rare genetic muscle disease that causes progressive weakness. Six adults receive a single intravenous infusion of the therapy, which delivers a working copy of the FKRP gene. The main goal is to check safety and tolerability over five years, with secondary measures looking at muscle function and breathing.

What this could mean

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

Active substance

ATA-100 (a gene therapy that delivers a working FKRP gene via a harmless virus)

What this could lead to

If successful, this could point toward a treatment that slows or stops muscle weakening in people with LGMDR9.

What could go wrong

This is a very early, small Phase 1 trial with only 6 participants, so safety and dosing are still being tested. It may not lead to a working treatment, and gene therapies can sometimes cause immune reactions.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for LGMDR9 are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

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

  • Institute of Myology Pitié-Salpêtrière Hospital 47 Bd de l'Hôpital

    Paris, 75013, France

  • Rigshospitalet, University of Copenhagen Blegdamsvej 9

    Copenhagen, 2100, Denmark

  • Royal Victoria Infirmary Queen Victoria Road Level 6 Leazes Wing

    Newcastle upon Tyne, NE1 4LP, United Kingdom