Status:

RECRUITING

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

Lead Sponsor:

argenx

Conditions:

Congenital Myasthenic Syndrome

Eligibility:

All Genders

2+ years

Brief 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 ...

Eligibility Criteria

Inclusion

  • 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

  • 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

Key Trial Info

Start Date :

February 13 2024

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

June 1 2027

Estimated Enrollment :

100 Patients enrolled

Trial Details

Trial ID

NCT06078553

Start Date

February 13 2024

End Date

June 1 2027

Last Update

December 19 2025

Active Locations (16)

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Page 1 of 4 (16 locations)

1

UC Davis Health - UC Davis Health Midtown Ambulatory Care Center

Sacramento, California, United States, 95816

2

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

Chicago, Illinois, United States, 60611

3

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

O'Fallon, Illinois, United States, 62269

4

Medical University of Vienna

Vienna, Austria, 1090