Recent advancements in hemophilia treatment have shifted the focus from survival to preventing musculoskeletal complications and improving quality of life. Even minimal joint bleeding can cause damage, but recognizing subclinical bleeding remains a challenge, leading to misdiagnosis and suboptimal care.
The purpose of the Joint Health in Inherited Bleeding Disorders Working Group is to improve the management of joint health in patients with inherited bleeding disorders, such as haemophilia, through evidence-based research, standardization of care, and educational initiatives. The Working Group will focus on improving early diagnosis of joint issues, improving management based on current best evidence and enhancing overall quality of life. The goals of the Working Group are:
- Establish standardized ultrasound biomarkers for identifying subclinical bleeding, synovitis, and osteochondral damage in patients with haemophilia.
- Collaborate with international and national scientific societies to establish a standardized language for the diagnosis and management of joint health using ultrasound.
- Promote education and training by developing and implementing courses on joint health assessment for healthcare providers in European Haemophilia Treatment Centres (HTCs).
- Define research priorities in the field of joint health in inherited bleeding disorders to focus on clinically relevant and patient-centered projects.