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florio HAEMO—A Digital Medical Device for Monitoring of Treatment, Symptoms and Physical Activities for People Living With Haemophilia

Königs, Christoph ; Astermark, Jan LU ; Blatny, Jan ; O´Hara, Jamie ; Iorio, Allfonso ; Negrier, Claude ; Peyvandi, Flora ; Steinitz, Katharina ; Reininger, Armin J. and Bonanad, Santiago (2026) In Haemophilia 32(2). p.438-446
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... (More)

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.

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author
; ; ; ; ; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
digital medical device, e-diary, electronic patient diary, florio HAEMO, haemophilia, web-based application
in
Haemophilia
volume
32
issue
2
pages
9 pages
publisher
John Wiley & Sons Inc.
external identifiers
  • pmid:41531101
  • scopus:105027466374
ISSN
1351-8216
DOI
10.1111/hae.70198
language
English
LU publication?
yes
id
987e022c-0ced-43dd-8b93-e011d1cb1811
date added to LUP
2026-03-16 15:07:36
date last changed
2026-05-12 01:40:29
@article{987e022c-0ced-43dd-8b93-e011d1cb1811,
  abstract     = {{<p>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.</p>}},
  author       = {{Königs, Christoph and Astermark, Jan and Blatny, Jan and O´Hara, Jamie and Iorio, Allfonso and Negrier, Claude and Peyvandi, Flora and Steinitz, Katharina and Reininger, Armin J. and Bonanad, Santiago}},
  issn         = {{1351-8216}},
  keywords     = {{digital medical device; e-diary; electronic patient diary; florio HAEMO; haemophilia; web-based application}},
  language     = {{eng}},
  month        = {{03}},
  number       = {{2}},
  pages        = {{438--446}},
  publisher    = {{John Wiley & Sons Inc.}},
  series       = {{Haemophilia}},
  title        = {{florio HAEMO—A Digital Medical Device for Monitoring of Treatment, Symptoms and Physical Activities for People Living With Haemophilia}},
  url          = {{http://dx.doi.org/10.1111/hae.70198}},
  doi          = {{10.1111/hae.70198}},
  volume       = {{32}},
  year         = {{2026}},
}