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Researchers track rare muscle disease to uncover its secrets

NCT ID NCT06078553

Recruiting now Knowledge-focused Sponsor: argenx Source: ClinicalTrials.gov ↗

First seen Jun 26, 2026 · Last updated Jul 23, 2026 · Updated 3 times

Summary

This study is for people with a rare genetic muscle condition called congenital myasthenic syndrome (CMS). It does not test any new drug or treatment. Instead, researchers will collect information from up to 100 participants over 4 visits to better understand how the disease affects symptoms and quality of life. The goal is to learn more about the natural course of CMS caused by specific gene mutations.

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Conditions

The condition(s) this trial relates to.

congenital myasthenic syndrome congenital myasthenic syndrome 10 congenital myasthenic syndrome 17 congenital myasthenic syndrome 8 congenital myasthenic syndrome 9

As listed by the trial registrant

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

CONGENITAL MYASTHENIC SYNDROME

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

Locations

  • Ann and Robert H Lurie Children's Hospital of Chicago - Main Hospital

    RECRUITING

    Chicago, Illinois, 60611, United States

    Contact Email: •••••@•••••

  • Assistance Publique Hopitaux de Paris - Hopital Pitie-Salpetriere

    RECRUITING

    Paris, 75013, France

    Contact Email: •••••@•••••

  • CHU Bordeaux - Groupe Hospitalier Pellegrin - Neurology

    RECRUITING

    Bordeaux, 33076, France

    Contact Email: •••••@•••••

  • CHU Lille Hopital Salengro - Neurology

    RECRUITING

    Lille, 59037, France

    Contact Email: •••••@•••••

  • CHU Timone

    RECRUITING

    Marseille, 13385, France

    Contact Email: •••••@•••••

  • Centre Hospitalier Regional Universitaire de Strasbourg - Hopital de Hautepierre

    RECRUITING

    Strasbourg, 67000, France

    Contact Email: •••••@•••••

  • Centrum Medyczne Neurologia Slaska - Neurology

    RECRUITING

    Katowice, 40-689, Poland

    Contact Email: •••••@•••••

  • Charite - Universitaetsmedizin Berlin

    RECRUITING

    Berlin, 10117, Germany

  • Fondazione IRCCS Istituto Neurologico Carlo Besta

    RECRUITING

    Milan, 20133, Italy

    Contact Email: •••••@•••••

  • Harvard Medical School - Boston Children's Hospital

    RECRUITING

    Boston, Massachusetts, 02115, United States

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • Hopital Universitaire de Bruxelles/ Academisch Ziekenhuis Brussel

    RECRUITING

    Brussels, Anderlecht, 1070, Belgium

    Contact Email: •••••@•••••

  • Hospices Civils de Lyon (HCL) - Hopital Pierre Wertheimer - Neurology

    RECRUITING

    Bron, 69500, France

    Contact Email: •••••@•••••

  • Hospital Sant Joan de Deu - Pediatric Neurology

    RECRUITING

    Esplugues de Llobregat, 08950, Spain

    Contact Email: •••••@•••••

  • Hospital Sisters Health System (HSHS) - St Elizabeth's Hospital

    RECRUITING

    O'Fallon, Illinois, 62269, United States

    Contact Email: •••••@•••••

  • Hospital Universitari i Politecnic La Fe

    RECRUITING

    Valencia, 46026, Spain

    Contact Email: •••••@•••••

  • Hospital Universitario 12 de Octubre

    RECRUITING

    Madrid, 28041, Spain

    Contact Email: •••••@•••••

  • Medical University of Vienna

    RECRUITING

    Vienna, 1090, Austria

    Contact Email: •••••@•••••

  • Medicover Integrated Clinical Services (MICS) Centrum Medyczne Bydgoszcz

    RECRUITING

    Bydgoszcz, 85-065, Poland

    Contact Email: •••••@•••••

  • National Center Hospital, National Center of Neurology and Psychiatry

    RECRUITING

    Kodaira, 187-8551, Japan

    Contact Email: •••••@•••••

  • National Hospital Organization Akita Hospital - Neurology

    RECRUITING

    Yurihonjō, 018-1393, Japan

    Contact Email: •••••@•••••

  • Ohio State Martha Moorehouse

    RECRUITING

    Columbus, Ohio, 43221, United States

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • Oxford University Hospitals NHS Foundation Trust - John Radcliffe Hospital

    RECRUITING

    Oxford, OX3 9DU, United Kingdom

    Contact Email: •••••@•••••

  • Pseg Centro De Pesquisa ClinicaS.A

    RECRUITING

    São Paulo, 04038-002, Brazil

    Contact Email: •••••@•••••

  • The Children's Hospital of Eastern (CHEO), Ottawa

    RECRUITING

    Ottawa, Ontario, K1H8L1, Canada

    Contact Email: •••••@•••••

  • The Children's Hospital of Philadelphia (CHOP)

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • The Ottawa Hospital - Civic Campus

    RECRUITING

    Ottawa, K1Y 4E9, Canada

    Contact Email: •••••@•••••

  • UC Davis Health - UC Davis Health Midtown Ambulatory Care Center

    RECRUITING

    Sacramento, California, 95816, United States

    Contact Email: •••••@•••••

  • UKRUB - Berufsgenossenschaftliches Universitatsklinikum Bergmannsheil GmbH

    RECRUITING

    Bochum, 44789, Germany

    Contact Email: •••••@•••••

  • Ulster Hospital

    RECRUITING

    Dundonald, BT16 1RH, United Kingdom

    Contact Email: •••••@•••••

  • Universidade de Sao Paulo (USP) Hospital das Clinicas da Faculdade de Medicina (HCFMUSP)

    RECRUITING

    São Paulo, 05403-900, Brazil

  • Universitaetsklinikum Essen (AoR)

    RECRUITING

    Essen, 45147, Germany

    Contact Email: •••••@•••••

  • Uniwersyteckie Centrum Kliniczne Warszawskiego Uniwersytetu Medycznego

    ACTIVE_NOT_RECRUITING

    Warsaw, 02-097, Poland

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