PB0628 - The World Federation of Hemophilia Living Guidelines Model

Background: Since the publication of the 3rd edition of the World Federation of Hemophilia’s (WFH) Guidelines for the Management of Hemophilia in August 2020, the WFH has been implementing a Living Guidelines Model (LGM) to ensure recommendations are kept relevant.

Aims: The aim of the WFH LGM is to provide timely updates to the recommendations in the 3rd edition of the WFH Guidelines by updating individual recommendations when new evidence becomes available.

Methods: The LGM will be implemented by multi-disciplinary Steering Committee (SC), Guidelines Oversight Committee (GOC) and topic-specific Working Groups (WG). All groups are composed of healthcare professionals, allied healthcare professionals and people with hemophilia/caregivers, with global representation. Individual recommendations will be updated on a prioritization and rotational basis, established by the SC. Systematic reviews of the literature will be conducted with medical librarians, systematic reviewers, methodologists, and guideline and content experts. The WG will update recommendations if there is sufficient new evidence. All updates will be posted on the WFH website and in the Haemophilia Journal.

Results: The SC established the first topic area to update will be gene therapy for hemophilia. The Working Group is being assembled and will include 32 members composed of healthcare professionals, allied healthcare professionals and people with hemophilia/caregivers, with the latter group making up 25% of the group. Conflicts of Interest for each member will be reviewed by the GOC prior to approval as a member of the WG. PICOs will be developed in the first quarter of 2023.

Conclusion(s): Developing and updating WFH recommendations using the LGM allows for a systematic prioritization of topics and evidence synthesis, with the unit of update as individual recommendations rather than chapters. This results in a more efficient, responsive process reflecting the latest evidence, and leads to updated recommendations earlier than the traditional approach.