Status:
RECRUITING
Ten Year Follow-up in FSHD: the FOCUS 3 Study
Lead Sponsor:
Radboud University Medical Center
Conditions:
FSHD - Facioscapulohumeral Muscular Dystrophy
Eligibility:
All Genders
6+ years
Brief Summary
This study aims to assess longitudinal data in 170 adult and 30 pediatric genetically and clinically well-defined facioscapulohumeral dystrophy (FSHD) patients. FSHD is a chronic progressive disorder ...
Eligibility Criteria
Inclusion
- All 162 genetically confirmed FSHD patients that participated in the FSHD-FOCUS 2 and 18 genetically conformed pediatric FSHD patient that participated in the FSHD-iFocus study and are informed about the genetic confirmation of FSHD. The 65 newly included patients need to provide genetical confirmation of the disease.
Exclusion
- No incapacitated persons will be included in this study. Persons with contra-indications for MRI-scan are excluded for that one procedure, but can be included in the study. Contraindications for MRI-scan include metallic implants (vascular clips, foreign bodies like metallic splinters in the eye, coronary and peripheral artery stents, prosthetic heart valves, pacemakers and ICD's, cochlear implants, breast tissue expanders and some other electronic implants or devices), renal insufficiency, previous allergic reaction to contrast fluids and known claustrophobia.
- Participant in medication trial
Key Trial Info
Start Date :
September 1 2024
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
December 30 2025
Estimated Enrollment :
200 Patients enrolled
Trial Details
Trial ID
NCT06911190
Start Date
September 1 2024
End Date
December 30 2025
Last Update
April 4 2025
Active Locations (1)
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1
Radboudumc
Nijmegen, Netherlands