ENROL Knowledge Pills just published: unleashing Rare Hematological insights on patient’s registries
Embark on a journey of knowledge with ENROL! Watch the videos available on eight languages thoughtfully crafted for patients seeking a deeper understanding of patient-centric research.
In a ground-breaking initiative aimed at empowering patients and advancing research in the realm of rare hematological disorders, the ERN-EuroBloodNet presents two videos in the framework of the ENROL, the European Rare Blood Disorders Platform, entitled "What is ENROL? European Patients Registry on Rare Hematological Disorders" and "What are PROMs and PREMs? How can they be connected to European Blood Registries as ENROL?"
The first covers a broad spectrum, offering insights into ENROL's structure, policies, adherence to European Rare Diseases, its role in supporting clinical research. The second video underlines the benefits of incorporating Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) into registries.
These videos are available on ERN-EuroBloodNet's EDU YouTube channel and are subtitled in eight languages: Dutch, English, French, German, Italian, Polish and Spanish.
Videos are curated by Maria del Mar Mañù Pereira, ENROL Coordinator & ERN-EuroBloodNet Scientific Director, and Mariangela Pellegrini, ERN-EuroBloodNet Educational & Patients Program Manager. Their expertise ensures that each Knowledge Pill delivers information, empowering patients and healthcare professionals alike.
Watch the video, gain insights, and empower yourself on the path to better health:
PLAYLIST 1: What is ENROL? European Patients Registry on Rare Hematological Disorders
PLAYLIST 2: What are PROMs and PREMs? How can they be connected to European Blood Registries as ENROL?