{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"Hemophilia in the Real World: Patient Engagement in Registries &amp; Data Collection","description":"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. &amp;nbsp; Guests: Mike Recht, MD, PhD, MBA Samantha Gouw, MD, PhD Maria Santaella, RN-BC, MSN, PhD(c) &amp;nbsp; Senior Advisor: Donna DiMichele, MD &amp;nbsp; Hosted by: Patrick James Lynch &amp;nbsp; Written by: Kay Vermeil &amp;nbsp; Featured Advertiser: Sanofi &amp;nbsp; Subscribe to the Global Hemophilia Report &amp;nbsp; Show Notes: &amp;nbsp; Presenting Sponsor: Presented by Sanofi &amp;nbsp; Sanofi\u2019s 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, \u201cDismissed,\u201d meet Isabelle\u2014a 15-year-old with hemophilia who\u2019s using her voice to uplift the unheard. Alongside her are four powerful stories of women challenging what\u2019s &quot;normal&quot; and demanding recognition, care, and justice. This is more than a film. It\u2019s a movement. \ud83d\udcfd\ufe0f Watch and share the trailer now. Learn more at http:\/\/dismissedfilm.com\/ &amp;nbsp; Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X\/Twitter Global Hemophilia Report on Facebook &amp;nbsp; Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook&amp;nbsp; BloodStream on X\/Twitter&amp;nbsp; &amp;nbsp; ","author_name":"Global Hemophilia Report","author_url":"https:\/\/www.bloodstreammedia.com","html":"<iframe title=\"Libsyn Player\" style=\"border: none\" src=\"\/\/html5-player.libsyn.com\/embed\/episode\/id\/37608645\/height\/90\/theme\/custom\/thumbnail\/yes\/direction\/forward\/render-playlist\/no\/custom-color\/88AA3C\/\" height=\"90\" width=\"600\" scrolling=\"no\"  allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen><\/iframe>","thumbnail_url":"https:\/\/assets.libsyn.com\/secure\/content\/191336535"}