Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company

INTRODUCTION: Real-world data are lacking regarding the relationship between prospectively collected patient-reported outcomes (PROs), clinical outcomes and treatment in people with haemophilia (PWH). The Expanding Communications on Hemophilia A Outcomes (ECHO) registry was designed to address this data gap, but a range of difficulties led to early study closure. AIM: To describe the challenges faced and lessons learned from implementing a …