An observational longitudinal study of congenital myasthenic syndromes
Not Applicable
- Conditions
- Congenital myasthenic syndromes (CMS)Musculoskeletal Diseases
- Registration Number
- ISRCTN18340272
- Lead Sponsor
- Oxford University Hospitals NHS Trust
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Ongoing
- Sex
- All
- Target Recruitment
- 50
Inclusion Criteria
1. Participants with a confirmed genetic diagnosis of CMS, who are referred to the Oxford CMS service for their clinical management
2. 0-100 years of age
3. Participant is willing and able to give informed consent for participation in the study
4. The participant must be able to understand written and spoken English
5. Able to attend clinic every 6 months for face-to-face assessment with a physiotherapist
Exclusion Criteria
1. Non-CMS medically or psychological conditions that may affect the OCMs, as judged by the medical team
2. Participants not compliant/unable to attend regular reviews in Oxford
3. Participants involved in other CMS research (e.g. novel therapies), which may impact the study assessments
Study & Design
- Study Type
- Observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method