Abstract
INTRODUCTION: Despite therapeutic achievements in haemophilia care, there is still the need to monitor and define personal treatment outcomes and document results to achieve the best possible care. Hence, a need for unbiased, timely and comprehensive real-world information exists to support informed shared decision-making regarding treatment and care. AIM: To describe a medical device for people living with haemophilia (PLWH) supporting an active involvement to achieve a near to normal life. METHODS: Florio HAEMO was developed as haemophilia monitoring platform to support PLWH and their care teams in documenting, interpreting and analysing personal reported outcomes. The tool was created partnering closely with PLWH and healthcare professionals to address previously unmet needs compared to existing applications. RESULTS: Florio HAEMO was launched in March 2020. Currently, it is available in 25 countries and 24 languages; 1558 PLWH (86% with haemophilia A) are registered users in 121 treatment centres across 20 countries. All users included are on a prophylactic treatment regimen. CONCLUSION: Florio HAEMO allows the collection of contemporaneous data to monitor treatment, like factor level, adherence and consumption as well as monitoring treatment outcomes, including pain, bleeds, wellbeing and levels of physical activity to support self-management, shared decision-making and to enable better care for PLWH. Data collected over time may help to show the impact of individualised prophylaxis and may support the definition of factor levels required for good bleed and joint protection in a real world setting from daily life to physical activities.