The European Principles of Inhibitor Management in Patients with Haemophilia were developed through a collaboration between EAHAD and the European Haemophilia Consortium (EHC). Their purpose is to serve as a benchmark for improving the multidisciplinary and practical management of inhibitors in haemophilia. The 10 principles put forth were defined by a multidisciplinary group of health professionals and patients and emphasise the importance and benefits of a centralised, multidisciplinary, expert, and holistic approach in addressing this most serious complication in haemophilia.
The 10 Principles of comprehensive inhibitor management are:
1. Awareness of the incidence of inhibitors and risk factors throughout life
2. Early recognition and accurate diagnosis
3. Optimal organization of care and communication between all stakeholders
4. Haemostatic treatment with bypassing agents in inhibitor patients
5. Inhibitor eradication by immune tolerance induction (ITI) therapy
6. Access to, and optimal preparation for, surgery and other invasive procedures
7. Provision of specialist nursing care
8. Provision of tailored physiotherapy care and monitoring
9. Access to psychosocial support
10. Involvement in research and innovation
The European Principles of Inhibitor Management in Patients with Haemophilia was published in Orphanet Journal of Rare Diseases in April 2018:
Giangrande, P.L.F., Hermans C. et al. European Principles of Inhibitor Management in Patients with Haemophilia. Orphanet Journal of Rare Diseases. 2018, 13:66.
Due to the rapidly changing haemophilia landscape in the era of new treatments, the authors of the position paper published an updated letter to the editor, which was released in August 2020.
You can read it here.
You can also consult the European Principles of Inhibitor Management in video format below