Actively Recruiting

Age: 2Years +
All Genders
NCT06078553

A Natural History Study in Participants With Congenital Myasthenic Syndromes (CMS) Due to Mutations in DOK7, MUSK, AGRN, or LRP4

Led by argenx · Updated on 2026-04-27

100

Participants Needed

20

Research Sites

172 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

Participants will attend up to 4 study visits to collect clinical assessments. The assessments will evaluate participants' symptoms and quality of life to understand disease activity in patients with CMS due to mutations in DOK7, MUSK, AGRN, or LRP4. More information can be found here: https://clinicaltrials.argenx.com/cms

CONDITIONS

Official Title

A Natural History Study in Participants With Congenital Myasthenic Syndromes (CMS) Due to Mutations in DOK7, MUSK, AGRN, or LRP4

Who Can Participate

Age: 2Years +
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Able to understand study requirements and provide written informed consent or assent
  • Male or female aged 2 years or older at consent or assent
  • Diagnosed with CMS caused by biallelic pathogenic mutations in DOK7 or any pathogenic mutations in MUSK, AGRN, or LRP4
  • Total Quantitative Myasthenia Gravis (QMG) score of 3 or higher for participants aged 6 years and older
  • If taking oral beta agonists (such as albuterol, salbutamol, ephedrine), must have been on medication for at least 3 months before screening or baseline
Not Eligible

You will not qualify if you...

  • Any medical condition that could interfere with accurate CMS assessment, as judged by the investigator
  • Currently participating in any interventional clinical study involving a study drug at the time of consent or assent
  • Diagnosis of CMS caused by mutations in genes other than DOK7, MUSK, AGRN, or LRP4

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 20 locations

1

UC Davis Health - UC Davis Health Midtown Ambulatory Care Center

Sacramento, California, United States, 95816

Actively Recruiting

2

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

Chicago, Illinois, United States, 60611

Actively Recruiting

3

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

O'Fallon, Illinois, United States, 62269

Actively Recruiting

4

Medical University of Vienna

Vienna, Austria, 1090

Actively Recruiting

5

The Ottawa Hospital - Civic Campus

Ottawa, Canada, K1Y 4E9

Actively Recruiting

6

CHU Bordeaux - Groupe Hospitalier Pellegrin - Neurology

Bordeaux, France, 33076

Actively Recruiting

7

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

Bron, France, 69500

Actively Recruiting

8

CHU Lille Hopital Salengro - Neurology

Lille, France, 59037

Actively Recruiting

9

CHU Timone

Marseille, France, 13385

Actively Recruiting

10

Assistance Publique Hopitaux de Paris - Hopital Pitie-Salpetriere

Paris, France, 75013

Actively Recruiting

11

Universitaetsklinikum Essen (AoR)

Essen, Germany, 45147

Actively Recruiting

12

Fondazione IRCCS Istituto Neurologico Carlo Besta

Milan, Italy, 20133

Actively Recruiting

13

National Center Hospital, National Center of Neurology and Psychiatry

Kodaira, Japan, 187-8551

Actively Recruiting

14

National Hospital Organization Akita Hospital - Neurology

Yurihonjō, Japan, 018-1393

Actively Recruiting

15

Centrum Medyczne Neurologia Slaska - Neurology

Katowice, Poland, 40-689

Actively Recruiting

16

Hospital Sant Joan de Deu - Pediatric Neurology

Esplugues de Llobregat, Spain, 08950

Actively Recruiting

17

Hospital Universitario 12 de Octubre

Madrid, Spain, 28041

Actively Recruiting

18

Hospital Universitari i Politecnic La Fe

Valencia, Spain, 46026

Actively Recruiting

19

Ulster Hospital

Dundonald, United Kingdom, BT16 1RH

Actively Recruiting

20

Oxford University Hospitals NHS Foundation Trust - John Radcliffe Hospital

Oxford, United Kingdom, OX3 9DU

Actively Recruiting

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Research Team

S

Sabine Coppieters, MD

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

0

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