Congratulations to the team at Tisento Therapeutics on publishing this important work – it was a privilege for Cogstate scientists to be involved! Your dedication to understanding the lived experience of those with MELAS is making an impact in the field and ensuring that clinical trials are designed with patients’ voices at the center.
For those living with the rare mitochondrial disease MELAS, which symptoms and impacts are most important to address? That’s what we learned from listening to patients and clinicians in our MELAS interview study. Like many rare diseases, there is a lack of understanding of how MELAS affects patients’ daily lives, and importantly, how to design clinical trials to measure what matters most to those living with the disease. This groundbreaking work helped close that knowledge gap and laid the foundation for what we’re measuring in our ongoing Phase 2b PRIZM study. The MELAS interview study findings were recently published in the Journal of Patient-Reported Outcomes. Learn more: https://lnkd.in/e-CZCPPN #WeHearYou #MitochondrialDisease #RareDisease #ClinicalResearch #PRO #PatientReportedOutcomes
psicooncologista | Trabalho Voluntário
1wCongratulations