The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases.

The EuroBioBank (EBB) network (www.eurobiobank.org) is the first operating network of biobanks in Europe to provide human DNA, cell and tissue samples as a service to the scientific community conducting research on rare diseases (RDs). The EBB was established in 2001 to facilitate access to RD biospecimens and associated data; it obtained funding from the European Commission in 2002 (5th framework programme) and started operation in 2003. The set-up phase, during the EC funding period 2003-2006, established the basis for running the network; the following consolidation phase has seen the growth of the network through the joining of new partners, better network cohesion, improved coordination of activities, and the development of a quality-control system. During this phase the network participated in the EC-funded TREAT-NMD programme and was involved in planning of the European Biobanking and Biomolecular Resources Research Infrastructure. Recently, EBB became a partner of RD-Connect, an FP7 EU programme aimed at linking RD biobanks, registries, and bioinformatics data. Within RD-Connect, EBB contributes expertise, promotes high professional standards, and best practices in RD biobanking, is implementing integration with RD patient registries and 'omics' data, thus challenging the fragmentation of international cooperation on the field.

Effect of integrated palliative care on the quality of end-of-life care: retrospective analysis of 521 cancer patients.

OBJECTIVE: To examine the impact of oncologist awareness of palliative care (PC), the intervention of the PC team (PCT) and multidisciplinary decision-making on three quality indicators of end-of-life (EOL) care. SETTING: Cochin Academic Hospital, Paris, 2007-2008. DESIGN AND PARTICIPANTS: A 521 decedent case series study nested in a cohort of 735 metastatic cancer patients previously treated with chemotherapy. Indicators were location of death, number of emergency room (ER) visits in last month of life and chemotherapy administration in last 14 days of life. Multivariable logistic regression models were used to estimate associations between indicators and oncologist's awareness of PC, PCT intervention and case discussions at weekly onco-palliative meetings (OPMs). RESULTS: 58 (11%) patients died at home, 45 (9%) in an intensive care unit or ER, and 253 (49%) in an acute care hospital; 185 (36%) patients visited the ER in last month of life and 75 (14%) received chemotherapy in last 14 days of life. Only the OPM (n=179, 34%) independently decreases the odds of receiving chemotherapy in last 14 days of life (OR 0.5, 95% CI 0.2 to 0.9) and of dying in an acute care setting (0.3, 0.1 to 0.5). PCT intervention (n=300, 58%) did not independently improve any indicators. Among patients seen by the PCT, early PCT intervention had no impact on indicators, whereas the OPM reduced the odds of persistent chemotherapy in the last 14 days of life. CONCLUSION: Multidisciplinary decision-making with oncologists and the PCT is the most critical parameter for improving EOL care.

Outstanding ethical-legal issues on biobanks. An overview on the regulations of the Member States of the Eurobiobank project.

EuroBiobank (EBB) was created in 2001. This is a network of European biological banks made up by 7 member States. The purpose of the network is to ease the access to the biological resources of the human being in patients who suffer uncommon diseases. This study deals mainly with the ethical-legal debate that has arisen in those States, as well as the existing legal regulation and the proposed recommendations for its possible solution. Likewise, there is a special mention about the informed consent, the possible use in the future of the samples in relation to its commercial use as industrial property rights and to Directive 2004/03 that was adopted by the European Parliament 31 March, 2004.

Outstanding ethical-legal issues on biobanks. An overview on the regulations of The Member States of the EuroBiobank project

En 2001, se creo EuroBiobank (EBB). Una red europea de bancos biológicos formado por 7 estados miembros que tiene como finalidad facilitar el acceso de recursos humanos biológicos de pacientes con enfermedades no comunes. Este estudio principalmente trata del debate ético-legal surgido en dichos estados, así como la regulación legal existente y las recomendaciones propuestas para su posible solución. Así mismo, se hace una mención especial al consentimiento informado, al posible fúturo uso de las muestras en relación a su comercialización como derechos de propiedad industrial y a la Directiva 2004/03 adoptada por el Parlamento Europeo el 31 de marzo de 2004

EuroBiobank (EBB) was created in 2001. This is a network of European biological banks made up by 7 member States. The purpose of the network is to ease the access to the biological resources of the human being in patients who suffer uncommon diseases. This study deals mainly with the ethical-legal debate that has arisen in those States, as well as the existing legal regulation and the proposed recommendations for its possible solution. Likewise, there is a special mention about the informed consent, the possible use in the future of the samples in relation to its commercial use as industrial property rights and to Directive 2004/03 that was adopted by the European Parliament 31 March, 2004

Outstanding ethical-legal issues on biobanks. An overview on the regulations of The Member States of the EuroBiobank project

En 2001, se creo EuroBiobank (EBB). Una red europea de bancos biológicos formado por 7 estados miembros que tiene como finalidad facilitar el acceso de recursos humanos biológicos de pacientes con enfermedades no comunes. Este estudio principalmente trata del debate ético-legal surgido en dichos estados, así como la regulación legal existente y las recomendaciones propuestas para su posible solución. Así mismo, se hace una mención especial al consentimiento informado, al posible fúturo uso de las muestras en relación a su comercialización como derechos de propiedad industrial y a la Directiva 2004/03 adoptada por el Parlamento Europeo el 31 de marzo de 2004

EuroBiobank (EBB) was created in 2001. This is a network of European biological banks made up by 7 member States. The purpose of the network is to ease the access to the biological resources of the human being in patients who suffer uncommon diseases. This study deals mainly with the ethical-legal debate that has arisen in those States, as well as the existing legal regulation and the proposed recommendations for its possible solution. Likewise, there is a special mention about the informed consent, the possible use in the future of the samples in relation to its commercial use as industrial property rights and to Directive 2004/03 that was adopted by the European Parliament 31 March, 2004