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Progress Report: Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment

Progress report from Dr. Tawil on making the National Registry more useful for research by providing genetic testing.
Aims: The aim of the present proposal is to offer present and future National FSHD Registry participants, who have not been genetically confirmed, the chance to get detailed genet… http://fshfriends.org/blog/progress-report-optimizing-utility-national-registry-fshd-research-and-trial-recruitment/

FSHD Registry

Dr. Rabi Tawil discusses the National Registry based in Rochester, NY.
What is the purpose of the National Registry of FSHD Patients and Family Members and how does it work? The FSHD Registry was created in 2000 with funding from NIH. Its purpose … http://fshfriends.org/blog/fshd-registry/

Commonality of Pain in DM & FSHD

258 members of the URMC Registry completed a survey last year. Results indicate that 79% of FSHD patients and 68% of DM patients experience pain.
Newsletter of the National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy (FSHD) Patients and Family Members. Reprinted with permission. How common i… http://fshfriends.org/blog/commonality-pain-dm-fshd/

ENMC Travel Grant

Small but critical grant awarded two key stakeholders in the push for FSHD trial readiness.
This grant covers travel and lodging for Hugh Dawkins and Richard Roxburgh for ENMC's Global FSHD Registry Framework: Stakeholder workshop which will revise the core data elements… http://fshfriends.org/blog/enmc-travel-grant/