Operationalising a Haemophilia Gene Editing Lexicon for Practical Use.

Area of Science:

• * Hematology
• * Genetic medicine
• * Medical communication

Background:

• * Gene editing therapies represent a significant advancement for treating hemophilia, improving patient quality of life.
• * Establishing clear communication is crucial for the safe and effective deployment of gene editing treatments.
• * A shared understanding between healthcare professionals (HCPs) and people with hemophilia (PWH) is essential for informed decision-making.

Purpose of the Study:

• * To operationalize a gene editing lexicon for widespread adoption within the hemophilia community.
• * To enhance the practical utility of the lexicon for real-world application.
• * To support informed consent and shared decision-making processes.

Main Methods:

• * An iterative development process involving hemophilia community representatives, including multidisciplinary HCPs, PWH, and caregivers.
• * Collaboration with language strategy experts to refine the lexicon and its operational aspects.
• * Evaluation of strategies for real-world adoption and impact.

Main Results:

• * Development of a comprehensive gene editing lexicon, enhanced with illustrative infographics.
• * Infographics were adapted from the lexicon to clarify complex gene editing concepts.
• * Infographics proved vital in promoting the lexicon's practical use, facilitating shared decision-making and informed consent.

Conclusions:

• * A gene editing lexicon holds significant promise for improving comprehension among all hemophilia community stakeholders.
• * Continuous updates to the lexicon, reflecting current therapies, are essential for sustained relevance.
• * Strategic adoption approaches, such as utilizing infographics, will maximize the resource's impact on patient care and outcomes.