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Translating Patient-Reported Clinical Outcomes into Patient-Informed Clinical Research Outcomes

Translating Patient-Reported Clinical Outcomes into Patient-Informed Clinical Research Outcomes

FromGlobal Hemophilia Report


Translating Patient-Reported Clinical Outcomes into Patient-Informed Clinical Research Outcomes

FromGlobal Hemophilia Report

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)

Led by science, curiosity, and storytelling, the Global Hemophilia Report from BloodStream Media is an entertaining monthly journey through the investigations and science driving hemophilia research around the world. Produced by: Believe Limited & BloodStream Media Hosted by: Patrick James Lynch Senior Advisor: Dr. Donna DiMichele Featured Advertiser: Sanofi Genzyme #GHRpod #hemophilia #clinicalresearch #bloodstreammedia