Big Data in Biobanking towards targeted medicine Ronald Stolk Professor Clinical Epidemiology, UMCG Board member Parelsnoer Institute Chief Scientific Officer LifeLines
What is a biobank? Systematic collection of biomaterials and associated clinical data Examples: population & hospital studies, clinical records (EHR, HIS) Biobank is Big Data for Health
Biobank is Big Data Registry (~ 0.2-1 Gb/person) Genomic, proteomic Repeated measurements over time Linkage with GP, hospital, national registries Biorepository (~ 10-50 /person) Different types of samples Small aliquots Multiple sampling
Why biobanks Better scientific research (quality and efficiency) To improve health care of future patients Valuable infrastructure Attractive for sponsors and granting agencies Facilitate international cooperation Attractive for research talents Competitive advantage
Why large biobanks Future of medicine is Personalized Health Care Focuses on individuals Personalized care, prevention, diagnosis Translate epidemiological associations at group level into individual risk estimates Combination of multiple risk factors Multi morbidity everybody is unique Large number of participants Homogeneous subgroups Rare risk factors
Dutch biobanks Biobank infrastructures by NFU BBMRI-NL: collaboration between all Dutch biobanks, part of BBMRI-EU Parelsnoer Institute: federated clinical biobank in all UMCs LifeLines: large population based biobank in the Northern provinces of the Netherlands
Why would you use Big Data for Health, available in biobanks? Cost effective use of data Less burden on participants / patients Enables novel research questions and innovation Creates bridges between disciplines by integration of data on various dimensions Opportunities for data validation
Big Data for Health: what is needed? Privacy, data security, data ownership Data storage, processing, quality Public trust: Who is going to use the data? How to arrange data access while privacy is protected? How to ensure that data benefits general public? Needed: Good governance Independent organization Expertise and knowledge
Connecting Dutch clinical biobanks Parelsnoer Institute: PSI Hereditary colorectal cancer Diabetes Rheumatoid arthritis and arthrosis Neurodegenerative disease Diseases Leukemia, myeloma and lymphoma Inflammatory bowel disease Etc. Cerebrovascular accident
PSI: design Patient COLLECT STORE USE In each UMC data collection and storage of samples Data extraction and transfer to Central Infrastructure Storage and dashboard Procedure of delivery of data and materials after medical ethical approval Research Pearl X among others SPSS On behalf of the Pearls University Medical Centers (UMCs) collect clinical data and biomaterials Biobanks in each UMC Central storage of data Biomaterials remain in each UMC biobank Data and biomaterials are available for research purposes: by the Pearls, other researchers within the UMCs and other parties Images center PSI METC-approval Harmonized SOP s Data definition Framework regulations
PSI output 14 disease areas ( pearls ) 8 UMCs, with affiliated hospitals ~22,000 patients ~50,000 samples >10 grant applications 5 real PSI publications Available on PSI website
PSI lessons learned It is possible to work together as UMC s Joint data collection, storage, usage, publications Core business of UMC more tightly linked: care and research on the same patient Input for research questions originate from care Results from research more easily fed back to care Standardisation of work flow for research benefits standard of care Input for new EHR s
What is LifeLines? LifeLines Cohort & Biorepository 167,729 participants at least 30 years follow-up Three generation design Northern region NL 10 LifeLines locations within the region www.lifelines.net
Baseline data collection Participants visit LifeLines Research Site Two visits of in total 70 minutes» Second visit fasting Content» Clinical measurements» Biomaterial collection At home» Feces, 24h urine collection» Questionnaires www.lifelines.net
Follow-up protocol Questionnaires Follow-up visit Link with external data (registries)» General Practitioners, hospital, Dutch Cancer Registry, Enrichment of LifeLines» Data and samples collected in add-on studies» Linkage with environmental data
Output >200 requests for data, biomaterials and for additional data collection approved by the LifeLines scientific board» internal medicine, genetics, epidemiology, environmental studies, nutrition, sociology, demography, economics Currently >60 researchers have data access Baseline paper Int J Epidemiol 2014 >30 publications in GWAS consortia >25 real LifeLines publications» Available on LifeLines website
BiKE Biobanking/cohort Knowledge and Expertise center Collaboration UMCG and LifeLines» Clinical and population based expertise Expertise» Study design/biobank setup» Big Data management (next generation sequencing, imaging)» Biomaterials processing and storage Services» Data analysis» Teaching and training
Big Data in Biobanking Now it gets more efficient to use existing biobanking projects with huge data and samples, rather than initiating new studies Big Data in Health are needed for Personalized (targeted) Medicine Infrastructures are available PSI, LifeLines, others
Available for you today: Data, samples Online catalogues Add-on studies New pearls PSI Additional questionnaires Additional assessments Infrastructure Expertise Public and private partners
www.lifelines.nl
Please visit our booths: PSI #5 LifeLines #7 www.parelsnoer.org www.lifelines.net www.hacn.nl/bike