RecruitingNCT06078553

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

Multicenter, Multinational, Natural History Study in Participants With Congenital Myasthenic Syndromes Due to Mutations in DOK7, MUSK, AGRN, or LRP4


Sponsor

argenx

Enrollment

100 participants

Start Date

Feb 13, 2024

Study Type

OBSERVATIONAL

Conditions

Summary

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


Eligibility

Min Age: 2 Years

Inclusion Criteria5

  • Can understand the requirements of the study and can provide written informed consent/assent, and willingness and ability to comply with the study protocol procedures
  • Is male or female and aged ≥2 years at the time of providing informed consent/assent
  • Has a diagnosis of CMS due to biallelic pathogenic mutations in DOK7 or any pathogenic mutations in MUSK, AGRN, or LRP4
  • Has a total Quantitative Myasthenia Gravis (QMG) score of ≥3 (applies only to participants aged ≥6 years)
  • For participants taking oral beta agonists (eg, albuterol, salbutamol, ephedrine), participant must have been receiving the medication for ≥3 months before screening/baseline

Exclusion Criteria3

  • Known medical condition that would interfere with an accurate assessment of CMS, in the investigator's opinion
  • Is currently participating in any interventional clinical study with a study drug at the time of providing informed consent/assent
  • Diagnosis of CMS due to mutation of any gene other than DOK7, MUSK, AGRN, or LRP4

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Locations(20)

UC Davis Health - UC Davis Health Midtown Ambulatory Care Center

Sacramento, California, United States

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

Chicago, Illinois, United States

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

O'Fallon, Illinois, United States

Medical University of Vienna

Vienna, Austria

The Ottawa Hospital - Civic Campus

Ottawa, Canada

CHU Bordeaux - Groupe Hospitalier Pellegrin - Neurology

Bordeaux, France

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

Bron, France

CHU Lille Hopital Salengro - Neurology

Lille, France

CHU Timone

Marseille, France

Assistance Publique Hopitaux de Paris - Hopital Pitie-Salpetriere

Paris, France

Universitaetsklinikum Essen (AoR)

Essen, Germany

Fondazione IRCCS Istituto Neurologico Carlo Besta

Milan, Italy

National Center Hospital, National Center of Neurology and Psychiatry

Kodaira, Japan

National Hospital Organization Akita Hospital - Neurology

Yurihonjō, Japan

Centrum Medyczne Neurologia Slaska - Neurology

Katowice, Poland

Hospital Sant Joan de Deu - Pediatric Neurology

Esplugues de Llobregat, Spain

Hospital Universitario 12 de Octubre

Madrid, Spain

Hospital Universitari i Politecnic La Fe

Valencia, Spain

Ulster Hospital

Dundonald, United Kingdom

Oxford University Hospitals NHS Foundation Trust - John Radcliffe Hospital

Oxford, United Kingdom

View Full Details on ClinicalTrials.gov

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NCT06078553


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