As gene editing technologies like CRISPR/Cas9 show promise in revolutionizing treatments for haemophilia, a key challenge remains: the lack of consistent and accessible language for discussing these complex therapies. A new initiative aims to bridge this communication gap by developing a globally aligned, clear, and accurate lexicon for gene editing in the context of haemophilia care.
The project brings together a diverse group of stakeholders, including patient organizations, scientific experts, and biotechnology companies, with the goal of creating a vocabulary that is both informative and understandable. Crucially, the lexicon will avoid over-promising outcomes or relying on overly technical jargon, ensuring that all members of the haemophilia community—from patients to healthcare providers—can engage in meaningful conversations about gene editing therapies.
Using a collaborative approach, the team will refine language concepts through feedback from around 70 participants, including lived experience experts (LEEs) and haematologists from the USA, UK, and Germany. This feedback will help shape the lexicon, which will be tested for clarity, accuracy, and patient comprehension.
The development of this lexicon will support informed consent processes and shared decision-making, ensuring that patients and their families fully understand the potential benefits and risks of gene editing treatments. The next phase of the project will focus on refining the language based on feedback, aiming to create a unified communication tool for the global haemophilia community.
Reference
Hermans C et al. A novel gene editing lexicon strategy for the haemophilia community: Research plan for development and preliminary results. Haemophilia. 2024;1-9.
