Finnish Hospital Biobanks

Transcription

1 Finnish Hospital Biobanks

2 What makes Finland an unique biobanking country what s all the noice for? Finnish genetic heritage is very homogenous offering good ground to study genetic diseases. Government support: Government s key project status and allocated funding. Finnish Biobank Act enables gathering of samples and related health data from consented people. Information from several different registers can be linked to biobank samples. Registers have been systematically built over decades. Finnish social security number allows linkage of data. Biobanks have the opportunity to contact sample donors.

3 Definitions - Biobank Act (688/2012) Biobank means a unit maintained by an operator engaging in biobanking activities for the purposes of collecting and storing samples and information associated with the samples for future biobank research. "Sample means human biological material or a technical record of such material. Biobank research means research utilising the samples contained in a biobank or information associated with them for the purposes of promoting health, understanding the mechanisms of disease or developing the products and treatment practices used in health care and medical care.

4 Population base of the hospital biobanks ; 16 % ; 5 % ; 10 % Biobank of Central Finland Biobank of Eastern Finland ; 13 % ; 21 % Tampere Biobank Helsinki Biobank ; 35 % Biobank of Northern Finland Borealis Auria Biobank

5 Samples transferred (by April 2018) Helsinki Biobank HUS pathology archives ( ) and Urology biobank ( ) Tampere Biobank PSHP pathology archives ( ) and genetic diagnostic sample collection ( ) Auria Biobank TYKS and Satakunta pathology archives ( ) Urological serum collection and endometriosis collection Biobank of Northern Finland - Borealis OYS-ERVA pathology archives ( ) FMCmotherhood cohort Biobank of Eastern Finland KYS pathology archives ( ) Over 10 million pathological samples and related data transferred. Biobank of Central Finland KSSHP pathology archives ( )

6 Prospective samples collected in Finnish Hospital Biobanks by April Total samples collected Samples collected year 2017 Aim to collect year 2018

7 Forthcoming legislation and developing ecosystem New and updated legislation Secondary use of health and social data Genome law Biobank Act 2.0 How will the biobanks cooperate with the new national centers? Genome -, neuro -, cancer center?

8 Coming up Medaffcon together with collaboration partners (Finnish Biobank Cooperative, University of Eastern Finland) is currently conducting a study about Hospital Biobanks in Finland The study will be performed as 2 phased interview study. During the first phase a structured online questionnaire form will be used to gather information about current status of the biobanks. During the second phase, the study will include face-to-face interviews with the representatives of the hospital biobanks. During these interviews more detailed information on the capabilities to perform industry-driven RWE-studies will be explored.

9 Aims of the study - Map the current status of the hospital biobanks in Finland - What is happening in the field? - Identify possible bottlenecks in Finnish biobanking - Explore the possibilities of Finnish biobanks to conduct industry-driven RWE-studies - Auria Biobank acts as a benchmark Suomen Terveystalon Biopankki

10 Study results will be available year 2018 Contact information: Werneri Tuompo Päivikki Hemmilä