Why involving patients in the IP-cure-B project?
The medical research project IP-cure-B’s objective is to develop novel curative concepts for chronic hepatitis B (CHB).
The participation of patients’ organizations in medical research is because they have the first-hand experience of a disease, unique expertise, and they can disseminate information, project results, and milestones that can be beneficial for patients and patient communities in a “patient-friendly” language.
Together with scientists, patient organizations can forge a pathway to access new and innovative treatments participating and co-creating each part of a project since its creation. The European Liver Patient Association (ELPA), for instance, has always taken part in each project it is involved in since the beginning, as a real peer-partner.
In the IP-cure-B project, ELPA, as a co-leader of the work packages responsible for Communication, Dissemination, and Exploitation, plays an active role in diﬀerent parts of the project by:
- participating in the IP-cure-B Trial Steering Committee;
- reviewing the proof of concept (PoC) clinical study protocol and the information to participants, advocating on behalf of IP-cure-B researchers, and disseminate clinical trial information;
- ELPA is also consulted to ensure that the ethics documents, information sheet, and patient consent form for the proof of concept (PoC) clinical trial are understandable by patients;
- interacting with the consortium scientists for eﬀectiveness studies;
- disseminating knowledge on HBV and the research progress made in the field of HBV therapy to raise awareness on this disease.