One of the largest health research infrastructures in Europe today is BBMRI-ERIC, a pan-European distributed research infrastructure of biobanks and biomolecular resources (www.bbmri-eric.eu).
Currently 16 European Member States and one International Organisation are working together to operate this biobanking infrastructure by facilitating access to biological resources as well as biomedical facilities to support high-quality biomolecular and medical research.
BBMRI always recognized that a research infrastructure that can facilitate the use of patient data, collected from biobanks of various types all around Europe, requires public confidence that the confidentiality and safety of patient data will be protected. Thus, the BBMRI Stakeholders’ Forum was established through IPPOSI in 2009 to assemble the input and requirements of the broad and heterogeneous stakeholder community of BBMRI, comprising patients, clinicians, funding organizations, associated project partners, industry, and users.
The BBMRI Stakeholders’ Forum is not a research network, but one that aims to facilitate research. It provides a forum for discussion; to exchange experience and knowledge; to be a think tank in the rapidly changing biobanking environment; and eventually to offer a platform for patients and users to interact systematically with investigators in biobanking and industry.
As part of the comprehensive consultation and engagement process, a number of information and discussion meetings as well as working group workshops were organised to allow for interactive communication and exchange of ideas.The outputs of these meetings and consultations are available in the IPPOSI publications section and the biobanking page of this website.