Patient advocacy group representatives and the Biobanking and BioMolecular resources Research Infrastructures – European Research Infrastructure Consortium (BBMRI-ERIC) met on 19 April to address key issues for a future constructive dialogue to ensure patients’ needs are well represented in the activities of BBMRI-ERIC.
In its mission to facilitate the access to resources and support high quality biomolecular and medical research BBMRI-ERIC aims to involve key stakeholders in its work to ensure their voice is heard and represented in European biomolecular and health research. As donations of valuable human biological samples and the corresponding data, stored by the biobanks, are essential for understanding human diseases and corresponding prevention programmes, BBMRI-ERIC is dedicated to consulting the patients’ community in this process.
Thus, BBMRI-ERIC firstly met with the patients’ groups representing areas of expertise on genetics, rare diseases, chronic diseases, healthy ageing/prevention, degenerative diseases, cancer, obesity, and infectious diseases to inform them of BBMRI-ERIC’s activities and to jointly address issues and concerns of the patient community. The stakeholders included BBMRI-ERIC, the European Institute of Women’s Health, European Cancer Patient Coalition, EURORDIS – Rare Diseases Europe, Genetic Alliance UK, Altsheimer Europe, and the Dutch Alliance for Rare and Genetic Disorders VSOP. Among the most pressing challenges identified were data (over)protection and the issue of consent, reciprocity and re-contacting the patients, and personalized medicine.
The launch of a stakeholder engagement with patient advocacy representatives is a very exciting initiative for BBMRI-ERIC, because it will provide input directly from the patient community, which will facilitate our focus on supporting the biological research capacity in Europe, intended to support the development of therapies for patients.
It is a first step to establish the Stakeholder Forum. More information on the Stakeholder Forum can be found under https://www.bbmri-eric.eu/about/