Finalist
XLH Matters – A New Interactive Meeting Platform Raising Awareness of XLH
Summary of work
X-linked hypophosphataemia (XLH) is a rare, life-long, progressive disease. Left untreated, XLH places a huge burden on children, affecting growth, mobility and causing severe pain. Historically, limited treatment options led to a lack of education, particularly around diagnosis and treatment of XLH. An interactive meeting platform, ‘XLH Matters’, was developed containing educational resources, high-quality presentations and engaging workshops delivered by an expert faculty from across EMEA. Overwhelming interest demonstrated the demand for education: 219 registrations and 133 HCPs (33% above target) attended the live event representing 23 countries. In a post-meeting survey 100% of respondents rated their confidence as high in recognising key signs and symptoms that prompt referral (vs 57% pre-meeting); 86% of respondents rated their confidence as high in diagnosing a child with suspected XLH (vs 68% pre-meeting) and 100% of respondents felt more confident in treating patients. Three months post-meeting there have been 506 visits to the platform (153% above target). Changes to clinical practice have been seen as a direct result of this meeting. Two multidisciplinary clinics have been established – Genova, Italy and Tel Aviv, Israel. Following case discussions with colleagues during the meeting, three patients from Israel and Hungary were diagnosed and treatment initiated.
Judges’ comments
The judges were impressed with this entry’s clear outlining of the issue and diagnosis need and commended ‘smart objectives with clear insights into behaviour change’. The panel also commented on the entry’s delivery of robust learning measurements and solid support to patients, highlighting how the disease manifests in complex ways. The tangible, life-changing outcome was excellent to see.
