41 min listen
Translating Patient-Reported Clinical Outcomes into Patient-Informed Clinical Research Outcomes
Translating Patient-Reported Clinical Outcomes into Patient-Informed Clinical Research Outcomes
ratings:
Length:
51 minutes
Released:
Mar 28, 2024
Format:
Podcast episode
Description
In this episode, delve into the transformative journey of patient-reported outcomes measures (PROMs) within hemophilia care, exploring their evolution from broad assessments of health-related quality of life to nuanced evaluations of physical ability, functionality, and psychological impact. Learn about pioneering instruments like the Hemo-TEM and the PROBE questionnaire, designed to capture the multifaceted burdens of hemophilia treatment and the patient experience. However, as the landscape of PROMs continues to evolve, discover lingering debates around their sufficiency compared to standardized measures like PROMIS, and the ongoing quest to ensure their responsiveness to change in evaluating novel therapeutics and treatment paradigms. Join us as we unravel the complexities of translating patient-reported clinical outcomes into patient-informed clinical research outcomes. Contributors: Mark Skinner, JD Brian O'Mahony Bradley Rayner Dawn Rotellini Mosi Williams, LCSW, MSW, PsyD Senior Advisor: Donna DiMichele, MD Hosted & Written by: Patrick James Lynch Featured Advertiser: Sanofi Subscribe to the Global Hemophilia Report Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter
Released:
Mar 28, 2024
Format:
Podcast episode
Titles in the series (29)
Inhibitors: Prevention, Eradication, and Lived Experiences: Inhibitor development has long been considered the most significant complication of severe hemophilia, but with the licensure of the first non-factor therapy and a robust pipeline of novel and gene therapeutics being investigated, is it still of... by Global Hemophilia Report