Helen Walker
@helenwalkerncl.bsky.social
UK Myotonic Dystrophy & FSHD Patient Registries Manager at JWMDRC.
Pls follow: @jwmdrc-registries.bsky.social / @jwmdrc.bsky.social
(she/her) *Views my own*
#neuromuscular #nmd #PatientRegistries #dm1 #dm2 #fshd #RareDisease #research #genetic
Pls follow: @jwmdrc-registries.bsky.social / @jwmdrc.bsky.social
(she/her) *Views my own*
#neuromuscular #nmd #PatientRegistries #dm1 #dm2 #fshd #RareDisease #research #genetic
February 28, 2025 at 3:48 PM
🗣️🤝An important way to ensure #PatientVoice' is included in your research is to collaborate with a #Patient #Registry, like ours covering FSHD in the UK: www.fshd-registry.org.uk
💻📝 Registries can provide high-quality longitudinal #data reports and can also support data collection and recruitment.
💻📝 Registries can provide high-quality longitudinal #data reports and can also support data collection and recruitment.
Facioscapulohumeral Muscular Dystrophy
- UK Patient Registry for FSHD
www.fshd-registry.org.uk
February 5, 2025 at 1:18 PM
🗣️🤝An important way to ensure #PatientVoice' is included in your research is to collaborate with a #Patient #Registry, like ours covering FSHD in the UK: www.fshd-registry.org.uk
💻📝 Registries can provide high-quality longitudinal #data reports and can also support data collection and recruitment.
💻📝 Registries can provide high-quality longitudinal #data reports and can also support data collection and recruitment.