September brings many opportunities for our community to learn and share our experiences with HCM through trials, focus groups, and survey work .
You have heard us stress the importance of understanding your presentation of HCM and if you are obstructed or non-obstructed. This is the prime factor in two of our projects.
- The first is the Study of Mavacamten in Non-Obstructive Hypertrophic Cardiomyopathy (ODYSSEY-HCM)
- The second is the (MAPLE-HCM) to compare the Efficacy and Safety of Aficamten (CK-3773274) Compared With Metoprolol Succinate in Adults With Symptomatic Hypertrophic Cardiomyopathy and Left Ventricular Outflow Tract Obstruction.
- Another trial project is for those with a specific HCM-causing gene mutation (MYBPC3) to evaluate the Efficacy, Safety, and Tolerability of MYK-224 in Participants With Symptomatic Obstructive Hypertrophic Cardiomyopathy. It is one of the first genetic therapy trials in HCM.
- For our younger HCM community members with the MYBPC3 gene, a study: Natural History Study in Pediatric Patients With MYBPC3 Mutation-associated Cardiomyopathy (MyCLIMB).
We are also building focus groups to look at the KCCQ tool for use in HCM, a focus group of men who have HCM and are symptomatic, and continuing our work with focus groups for genetic therapy.
If you are interested in any of these trial or focus group opportunities, please send me an email with your contact information – my email is ross@4hcm.org. If you have not gone through the HCMA Intake process within the last two years, we will be asking you to complete an intake so we can have the best understanding of your current health and HCM presentation.
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