Key Takeaway
ClinicalTrials.gov lists this registry as Unknown, which does not establish whether registration is open or closed. Ask the Newcastle registry team about current participation.
Trial and Study Record
Global FKRP Registry
International FKRP patient-registry record designed to characterize the population, support standards of care work, and help identify participants for future studies. ClinicalTrials.gov currently lists the study status as Unknown because the record has not been verified since January 2024.
RegistryRegistryNatural HistoryFamilies
Why this record matters
- Registry participation is not treatment, but it matters because it helps define the global FKRP population and can support future study planning.
- The record explicitly links registry data collection to clinical-trial facilitation and standards-of-care development.
- The United Kingdom location is the listed coordinating site; the source describes an international registry, not a UK-only patient population.
Eligibility and participation notes
- The record describes eligibility for people with a confirmed FKRP-related condition based on genetic testing.
- The listed study population includes children, adults, and older adults and does not state exclusion criteria for registry enrollment.
- The record describes patient-reported and clinician-reported data collection including respiratory and cardiac measures, genetics, quality of life, and pain.
Limits and cautions
- ClinicalTrials.gov lists the status as Unknown because the record was last verified in January 2024; its last known status was Recruiting, but that does not confirm current enrollment.
- Registry data quality depends on ongoing updates and completeness of participant and clinician reporting.
- A patient registry does not by itself answer treatment-effect questions.
- Public record language should not be read as a guarantee of trial availability for any individual participant.
- The registry website's current registration instructions could not be verified during this check; the institutional contact page provides a route to ask the team.
Primary Sources
Direct links for verification
Primary registry or publication source used for the structured study summary on this page.
The institutional contact page lists the FKRP registry team for questions about current registration and updates.
Related Content
Related routes inside the site
Study Record
Clinical Trial Readiness for the Dystroglycanopathies
Prospective University of Iowa natural-history study collecting clinical, functional, respiratory, quality-of-life, and selected biospecimen data across dystroglycanopathies.
Study Record
Long-Term Development of Muscular Dystrophy Outcome Assessments
A 24-month observational study evaluating clinical and patient-reported outcome measures across selected muscular dystrophies, including LGMD subtypes.
Study Record
Study of BBP-418 in Patients With LGMD2I
Phase 2 open-label ribitol study in FKRP-related LGMD2I/LGMDR9 that provides the main early clinical development context for the BBP-418 program.