The GRASP-LGMD Consortium is a group of doctors, physical therapists, and clinical research coordinators who collaborate to measure how the symptoms of LGMD change over time. Studies like this, called Natural History Studies, are critical for the design of future
GRASP-01-003 Natural History Study is recruiting, now through April 30
What is a natural history study? A natural history study is a research study that collects information about the genetics, symptoms, and lived experiences of individuals. These studies are considered observational, because they do not include an interventional drug or therapy,
New Research Alert: GRASP-001 Study
New data from the GRASP-001 study identify clinical outcome assessments for future LGMD2A/R1 clinical trials A team of LGMD researchers, called the GRASP-LGMD Consortium, published the baseline results of their LGMD2A/R1 clinical outcome study in the Annals of Clinical and Translational Neurology.
What can YOU do to drive LGMD2A/R1 research forward? Participate in a natural history study!
What is a natural history study? A natural history study is a research study that collects information about the genetics, symptoms, and lived experiences of individuals. These studies are considered observational, because they do not include an interventional drug or
Sarepta Therapeutics recruits for clinical outcomes assessment study
C3 is pleased to share this opportunity on behalf of Sarepta Therapeutics: Sarepta welcomes individuals with LGMD2A/R1 to join a clinical outcomes assessment study. To learn more about the study, visit journeyLGMD.com
New natural history study recruiting individuals with LGMD2A/R1 in France
Coalition to Cure Calpain 3 is pleased to share information regarding a natural history study being conducted in France. Patients must be affiliated with French social security to participate. Additional inclusion criteria is detailed in the flyer below. If you
WATCH: Sarepta presents webinar about new natural history study for individuals living with LGMD2A/R1
Sarepta Therapeutics recently joined C3 to present a community webinar titled “Journey Update for the LGMD2A/R1 Calpainopathy Community.” During the webinar, Sarepta discussed the essential role for natural history studies throughout the drug development process. They then shared the design
C3 hosts Sarepta to present webinar about the JOURNEY natural history study
Click here to register!
Trial readiness study for individuals with LGMD2A/R1
Please contact either Ruby Langeslay or Jennifer Raymond at Virginia Commonwealth University for more information
Casimir Recruiting LGMD2A/R1 Patients for At-Home Study
The Casimir LGVA study is quickly filling! We are specifically seeking individuals with LGMD2A who can walk across a room and stand up from sitting on a couch to participate. Email LGMDS@casimirtrials.com or call (800)542-0948 for more information.