Hemophilia in the Real World: Patient Engagement in Registries & Data Collection

In this episode of the Global Hemophilia Report, host Patrick James Lynch and a panel of experts discuss the importance of real world data and patient engagement in hemophilia care. The conversation explores how data collected outside of clinical trials provides deeper insights into treatment outcomes, challenges, and lived experiences. Guests share strategies for improving data reliability, motivating patient participation, and balancing privacy with research needs. Tune in for key takeaways on how both numbers and personal stories shape better care for the hemophilia community.

Guests:

Mike Recht, MD, PhD, MBA

Samantha Gouw, MD, PhD

Maria Santaella, RN-BC, MSN, PhD(c)

Senior Advisor: Donna DiMichele, MD

Hosted by: Patrick James Lynch

Written by: Kay Vermeil

Featured Advertiser:

Sanofi

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Show Notes:

Sanofi’s Global Hemophilia Survey uncovers significant care gaps and emotional challenges faced by patients and caregivers. Learn how improving health literacy and fostering better patient-provider communication are essential to addressing these inequities. Explore the findings and see how Sanofi is driving health equity for the hemophilia community. Explore the survey findings here: Global Hemophilia Survey Page.

For too long, women and girls who bleed have been dismissed. Left out of the narrative. Ignored by the system. But not anymore.

In our new film, “Dismissed,” meet Isabelle—a 15-year-old with hemophilia who’s using her voice to uplift the unheard. Alongside her are four powerful stories of women challenging what’s "normal" and demanding recognition, care, and justice.

This is more than a film. It’s a movement.

📽️ Watch and share the trailer now. Learn more at http://dismissedfilm.com/