NCT04369209

A Registered Cohort Study on FSHD1

A Registered Observational Cohort Study of Facioscapulohumeral Muscular Dystrophy Type 1

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 1,000 (estimated)
• Sponsor: Ning Wang, MD., PhD. · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Accepted

Summary

The data to be collected is intended to help healthcare providers make important medical and financial decisions concerning FSHD1, through an enhanced understanding of the prevalence, progression and natural history of FSHD1.

Detailed description

The China FSHD1 patient registry is a nationwide, population-based, non-interventional, observational cohort clinical study of all age groups of genetically-confirmed FSHD1 patients from families (with at least 1 affected member), collecting data retrospectively at study entry and prospectively during follow up. The data to be collected is intended to help healthcare providers make important medical and financial decisions concerning FSHD1, through an enhanced understanding of the prevalence, progression and natural history of FSHD1.

Conditions

• Facioscapulohumeral Muscular Dystrophy Type 1 (FSHD1)

Timeline

• Start date: 2001-01-01
• Primary completion: 2031-12-01
• Completion: 2031-12-01
• First posted: 2020-04-30
• Last updated: 2024-08-26

Locations

1 site across 1 country: China