75. Yuille M. et al. Biobanking for Europe, Briefings in Bioinformatics (2008); 9(1): pages 14-24.
Download at: http://bib.oxfordjournals.org/cgi/content/full/9/1/14
Biobanks across Europe are subject to fragmentation, insecurity of funding and incompleteness. To address these issues, a Biobanking and BioMolecular Resources Infrastructure (BBMRI) is to be developed across Europe. This review describes the work involved in preparing for the construction of BBMRI in a European and global context.
Website BBMRI: www.bbmri.eu
76. Mayerhofer M. Patient organization as the (un) usual suspects. In: Herbert Gottweis and Alan Petersen, editor. Biobanks; Governance in comparative perspective. 1st ed. Newyork, USA: Routledge; 2008. p. 71,72-85.
77. C. Smit. In: EPPOSI conference, data-and bio-banking for research, towards joint ventures of patient organisations, science and industry on the road to validated expertise and new therapies. May 6-9 2006 & October 25-27 2006.
Download report at: http://www.epposi.org/upl/1/default/doc/Conference%20on%20Data%20and%20Bio-Banking%20for%20Research_Conference_Report(1).pdf
Background
The European platform for patients’ organisations, science and industry (EPPOSI) is an EU patient driven partnership between patient organisations, industry and academic science and clinicians. It was founded in 1994 to discuss and influence policies in human health care in Europe, based on cooperative views by its stakeholders. This EPPOSI conference brought together these different stakeholders for the first time to discuss the future of bio-banks. Bio-banks are collections of human biological samples and associated data for research and therapy development. The potential benefits for unravelling the molecular pathology and biology of disease are enormous. At the conference representatives of several patent organisations demonstrated how their self-developed bio-and databanks can progress to effective therapies for thus far untreatable diseases. Other speakers went into detail about the needs of scientists with regard to the development of bio-banks.
Conclusions
Patient organisations have a key role in promoting the need for tissue and sample banks.
When constructing sample and data-banks the experience, knowledge and expertise of patients and families must not be overlooked.
Recommendation
Patient organisations have an important role in bio-banking. They can raise awareness about the usefulness of bio-banks. But there is a need to educate patient organisations in how to start and structure a bio-bank.
Website EPPOSI: www.epposi.org