https://www.youtube.com/watch?v=jRfPtBnur1s Building on the success of our most recent webinar on Patient-Reported Outcome Measures (PROMs), our August webinar will expand on the topic of PROMs, delving deeper into the realities... read more →
https://www.youtube.com/watch?v=Wg-Bx8H1-j4& Daniel Lewi (CATS Foundation), Ellen Haf Davies (Aparito), and Femida Gwadry-Sridhar (Pulse Infoframe) discuss their experiences using rare disease patient data to drive research forward. Streamed on 29 July... read more →
https://www.youtube.com/watch?v=EKgieiPGnG0 Patient registries—Does your population need one?
https://www.youtube.com/watch?v=I8SbtXpktH8 Learn about the CDKL5 Registry, International CDKL5 Disorder Database, & Connect CDKL5, and how they complement research goals. Q&A Panel will follow. Panel: Dan Lavery (Loulou Foundation), Helen Leonard... read more →
https://www.youtube.com/watch?v=eYEmLaiVNic Registry Diversification — Building Sustainable Disease Registries to Accelerate Research and Improve Lives
https://www.youtube.com/watch?v=IMIYYUJmNNM Patient registries are centralised databases that collect medical information about patients with a particular condition or group of conditions. Patient registries are often particularly valuable for rare diseases, especially... read more →