Wolfgang Miesbach: Nurses at the Heart of Gene Therapy
Wolfgang Miesbach, Professor of Medicine at Frankfurt University Hospital, shared a post on LinkedIn about a recent article by Greta Mulders et al, published in Haemophilia Journal, adding։
“Nurses at the Heart of Gene Therapy, Gene therapy for haemophilia is changing everything – and this new open‑access paper makes one thing clear: without specialised nurses, it simply doesn’t work.
Mulders et al. show how haemophilia nurses are now:
- guiding shared decision‑making and translating complex risk/benefit discussions into real‑world choices
- coordinating eligibility work‑up, AAV testing, and site readiness before infusion
- running safe infusion days with close monitoring and clear protocols
- leading long‑term follow‑up across hub‑and‑spoke networks, including liver tests, factor levels, and steroid management
- supporting psychosocial adjustment and lifestyle change as patients move from chronic treatment to (near) normal life
- feeding data into registries and research so we can understand durability and safety in the real world
If we want gene therapy to deliver lasting, meaningful benefit for people with haemophilia, we must invest in haemophilia nursing – education, dedicated roles, and time for coordination and research.
Congratulations to Greta Mulders, Simon Fletcher, PhD, Aysen Tasgin, Marica Moro, Marlene Beijlevelt and Kate Khair”
Title: Defining the Role of Nurses in Gene Therapy for Haemophilia
Authors: Greta Mulders, Simon Fletcher, Aysen Tasgin, Marica Moro, Marléne Beijlevelt, Kate Khair
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