LifeLines Cohort Study. Salome Scholtens, Manager Research Office

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1 LifeLines Cohort Study Salome Scholtens, Manager Research Office

2 What is LifeLines? Biobank» LifeLines Cohort & Biorepository 165,000 participants at least 30 years follow-up Three generation design Northern region NL Coordination: Groningen 10 LifeLines locations within the region 2

3 Big Data for health Move forward to personalized medicine Everybody is unique!

4 Big Data for health From group level towards individual risks Combination of multiple risk factors Interaction of risk factors everybody is unique Essential: Large number of participants Broad data collection Linkage with other data sources Follow-up

5 Big Data for health Integration of large databases on various dimensions Demographic, genetic, lifestyle, medical, pharma, environmental, social genome, etc. Benefits: Crucial insights into health problems Innovative knowledge development Secondary data: (cost)effective use of data Objective data

6 Big Data for health: challenges Data ICT How to get the right data? Data quality, linkage Storage, processing capacity, bio statistics Privacy and data ownership: Privacy protection, risk of de-identification, public trust Governance: Who owns what? Data stewardship

7 Biobank? Integration of data and knowledge Benefits for society: public function Research infrastructure Central organization needed with expertise Biobanks play essential role

8 Aim LifeLines To investigate why some people get old in a healthy manner, and others have already severe impairments or diseases early in their life To enable research on interactions between diverse environmental, phenotypic and biological factors Translate epidemiological associations at group level into individual risk estimates

9 Population

10 LifeLines participants sep 2012: FINAL:

11 Inclusion All GP practice s within region are invited to participate Within a GP practice all patients aged years are invited by the GP Participants are asked about family members Family members are invited by LifeLines 11

12 Participants 167,729 (58% Female) Adults years 84.0% Elderly >65 years 7.2% Children 9-18 years 5.8% Children <8 years 3.0% Families relations 67% Participant - child 27% 3 generations 12% 12

13

14 Data and samples collected

15 Baseline data collection Participants visit LifeLines Research Site Two visits of in total 70 minutes Second visit fasting Content Measurements Biomaterial collection At home: 24h urine collection questionnaires 15

16 Baseline measurements Questionnaires Medical history Nutrition Lifestyle Quality of life Psychological items Social network Daytime spending, sleep Measurements Anthropometry Blood pressure ECG Lung function Cognition Psychiatric interview

17 -80 ºC biorepository: LifeStore 20 x 6 x 6 m 8 million tubes

18 Follow-up protocol Questionnaires Every 1.5 year Follow-up visit Every 5 year Link with external data (registries) General Practitioners, hospital records, registries, 18

19 LifeLines DEEP

20 Geocoding Home address being geocoded Work address being geocoded Linkage with environmental data Air pollution Noise Distance to stores, facilities, etc Distance to green area. 20

21 Air pollution by geocoding

22 Access to LifeLines

23 Unique assests Data and samples are available for all researchers LifeLines does not perform research All data and samples are collected, processed and stored by LifeLines Professional organization, independent from individual investigators» Transparent in data collection and storage» Focus on privacy, security and quality» Data is accessible

24

25 Access to LifeLines Application procedure Review by Scientific Board LifeLines Research Office Access fee Data / material transfer agreement Applications 215 approved Over 50 researcher data access 48 publications

26

27 Opportunities & challenges

28 Challenges: TRUST Big data is sensitive topic Communication is key Participants General public Transparent and open Good governance Open data?

29 Opportunities National research infrastructure Expertise development Privacy and ethics ICT solutions and big data handling Bio material storage Questionnaire development (digital/paper) Participant communication National & international collaborations

30 In summary LifeLines: Largest Dutch cohort study Over participants Broad data and sample collection LifeLines is a research infrastructure Expertise development Ample opportunities for (inter)national collaborations

31 Thank you!

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