NSAF Validation
Research type
Research Study
Full title
Validation of a New Clinical Outcome Measure for Facioscapulohumeral Muscular Dystrophy: The North Star Assessment for FSHD (NSAF)
IRAS ID
366760
Contact name
Giorgio Tasca
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
2 years, 2 months, 1 days
Research summary
Facioscapulohumeral muscular dystrophy (FSHD) is a muscle-wasting condition that affects people in very different ways. It progresses slowly and often impacts facial muscles, shoulders, and legs. One of the biggest challenges in FSHD is tracking how the disease changes over time, especially in preparation for clinical trials of new treatments. Right now, doctors and researchers use tests to measure strength and ability, but most of these tests were not designed specifically for FSHD, and they may miss small but important changes in a person’s condition. In this project, we will create and test a new tool called the North Star Assessment for FSHD (NSAF). This tool builds on existing assessments used in similar diseases and adds specific features important for FSHD, like facial and arm movements. We also plan to compare this new tool with newer technologies, like video analysis and wearable sensors, to see how well they work together. Our hope is that the NSAF will become a reliable and easy-to-use test for doctors and researchers, making it easier to follow patients over time and design better clinical trials.
REC name
London - Harrow Research Ethics Committee
REC reference
26/LO/0298
Date of REC Opinion
2 Jul 2026
REC opinion
Further Information Favourable Opinion