WebSep 10, 2024 · We are using the FSHD-CTRN patient engagement model to address specific aims or difficulties encountered in running the proposed study; for example, defining what would be clinically meaningful to people with FSHD, addressing concerns related to participating in clinical studies, and issues with recruitment and retention. WebApr 8, 2024 · 268th ENCM workshop - Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials 1 Author links open overlay panel Federica Montagnese a , Katy de Valle b , Richard J.L.F. Lemmers c , Karlien Mul d , Julie Dumonceaux e ,
Clinical Trial Research Network (CTRN) – FSHD
WebApr 21, 2024 · The FSHD Society is launching a collaboration involving the FSHD Clinical Trial Research Network (CTRN) and BullFrog AI, an innovator in artificial intelligence, to analyze the largest-yet natural history dataset collected from patients with facioscapulohumeral muscular dystrophy (FSHD). WebAug 11, 2024 · The CTRN was formed to create an infrastructure of clinics with the expertise to accelerate therapeutic development for FSHD: by ensuring site training of key personnel; streamlining regulatory oversight and data capture; validating novel clinical outcome measures; and refining clinical trial strategies. mega heal ointment
FSHD Clinical Trial Research Network Kansas City KS
WebDec 8, 2024 · Transcriptomic studies of regenerating healthy and FSHD muscle show that myogenic gene expression is elevated in FSHD muscles compared to controls. At the protein level, assayed by immunofluorescence, developmental myosin heavy chain was also elevated in FSHD vs controls. WebThe activities funded include blood-based biomarker discovery & validation and the addition of 50 more subjects with FSHD to the MOVE/MOVE+ Natural History studies. The CTRN … WebJan 17, 2024 · The 2024 FSHD International Research Congress, held virtually on June 24–25, convened over 350 researchers and clinicians to share the most recent advances in the understanding of the disease mechanism, discuss the proliferation of interventional strategies and refinement of clinical outcome measures, including results from the … megaheal ointment composition