The Swedish biobank infrastructurecurrent status and future perspectives
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1 The Swedish biobank infrastructurecurrent status and future perspectives Therese Fagerqvist Ph.D, Project manager Regional biobankcenter Uppsala-Örebro
2 A biobank in Sweden Definition of a biobank A biobank is a collection of samples taken within the healthcare and is saved for more then two months. Includes all types of human samples. The samples can be traced back to an individual. Entity responsible for a biobank Care provider (County council) Research institution (University) Other (private company, goverment agency)
3 90% of samples are stored in the health care sector 450 Biobanks with more than 150 million samples managed mainly by the healthcare 200 biobanks managed by the counties/regions (health care) includes over 90 % of all stored samples > 95 % samples stored for medical care < 5% samples stored for research
4 Biobanks within the health care sector Biobanks for medical care The samples are taken, analysed and stored within healtcare for health care purposesto provide the patient with a diagnosis, treatment guidence, follow up etc. These samples can also be used for research. Biobanks for research The samples are taken, analysed and stored within healtcare for research purposes- -Clinical trials -Academic studies -Large cohorts
5 The Swedish biobank law Biobanks in Medical Care Act (2002:297) The act regulates how human biological material is to be collected, stored and used for certain purposes with respect for the personal integrity of the individual. If samples are to be used in research: -Approval from ethics committee - Consent from sample donor -Approved biobank application -Approval from the Swedish Medical Products Agency Samples can be sent for analysis abroad (MTA required), but after analysis the samples must be sent back or destroyed.
6 Common webpage = biobanksverige.se
7 Common national principles, application forms and information
8 New organisation-new name
9 Biobank Sverige A national Biobank infrastructure for collection and access to sample and associated data for the benefit and health of all residents
10 General goals To build a coherent, improved and long term sustainable national biobank infrastructure for healthcare, academia and industry with the optimal conditions for both national and international cooperation The infrastructure will enable a national accessible, cost effecient and competitive collection and biobankning which will secure the access of samples with high quality This will result in benefit for the patient and be conducted in a secure manner for patients and sample donors and in accordance with their consent
11 Extended cooperation for the common good Healthcare Patients Sample Data Clinical resources Academia Research & Development Technology Analysis methods Bioinformatics Research leads to development of healthcare Industry Product ideas Product development Technology Clinical trials
12 Value for medical research Advice and support for sample collection and withdrawal Prospective collection of blood/fluid and associated data Prospective collection of tissue and associated data Access to retrospective healthcare samples (blood/fluid) and associated data Access to retrospective healthcare samples (tissue) and associated data Access to retrospective research samples (all types) and associated data IT structures in order to be able to store, locate and apply for access to samples
13 Roles and working groups Biobank Sverige, continuation of BBMRI.se National board R&D heads and deans Biobank Sverige Preparatory group New Scientific Advisory Board National biobank strategist Implement prioritized investigations together with working group New National IT strategist New Strategic development of common IT issues together with working group Office WG1: Regulatory biobank service WG2: Operative biobank service New Heads of Regional BiobankCentre (RBC) 21 Biobank coordinators (BBS) Heads of biobank facilities Entry point in all biobank matters within the healthcare system 7 Sample service coordinators Research support and national coordination New
14 Thank you or
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