1. Showcasing ALSPAC as a resource for social and health researchers Andy Boyd The Royal Statistical Society 4 th April 2011

2. ALSPAC The Avon Longitudinal Study of Parents and Children A brief history & introduction 2

3. ALSPAC: Study History Established by Professor Jean Golding Initial funding from the Department for the Environment Need identified at WHO Europe conference in Moscow for a series of pan-European cohorts with comparable design and data collection tools - ELSPAC Known to its participants as Children of the 90s To determine ways in which the individuals genotype combines with environmental pressures to influence health and development Golding 2001 3

4. ALSPAC: British Birth Cohorts 1946 National Birth Cohort (NBC) 1958 National Child Development Survey (NCDS) 1970 British Birth Cohort (BCS70) ALSPAC 1991-1992 Millennium Cohort Study (MCS) 2012 Birth Cohort Facility 4

5. ALSPAC: defining characteristics Regional catchment area –Permanent study center in Bristol Multi-generational Health and genetics reputation –Extensive social measures 5

6. ALSPAC: defining characteristics Extensive biobank Intensive and frequent follow-up Used as a sampling frame Expanding record linkage arrangements 6

7. ALSPAC: Eligibility Pregnant women resident in Avon (excluding the city of Bath) with an expected date of delivery between 1 st April 1991 and 31 st December 1992 7

8. ALSPAC: Sample size Core participating sample of 14,541 pregnancies resulting in 14,062 live born children ~ 8500 young adults participated between ages 16-18 10 000 children attended at least one clinic Outreach clinics are helping to boost numbers and target young people from socially deprived areas 8

9. ALSPAC: The resource Questionnaires Hands-on Clinical Assessments Biological Samples DNA & Genotyping Record Linkage to routine information Future Collections 9

10. ALSPAC: Questionnaires 17 questionnaires about the mother 23 mother completed about the child 22 questionnaires completed by the child 15 questionnaires completed by the partner Many other single topic or sub-sample questionnaires –10 Puberty questionnaires between ages 8 to 18 –Web based data collection –Questionnaires administered in schools 10

11. ALSPAC: Clinical Assessments Children in Focus –10% sub sample –10 clinics between 4 – 61 months Focus Clinics –Open to all eligible study children –9 clinics from age 7 – 17 11

12. ALSPAC: Clinical Assessments Mothers clinics –Opportunistic data collection at child focus clinics –First mothers clinic running from 2009-2011 –Funding secured for two further waves Fathers clinics –Some opportunistic data collection –Funding secured for first fathers clinic 12

13. ALSPAC: Biological Samples Collected since pregnancy –Blood –Urine –Hair –Nails –Teeth –Saliva –Placenta 13

14. ALSPAC: DNA & Genotyping DNA extracted for over 10,000 children and mothers Cell lines produced for ~7,000 children and 6,000 mothers GWAS, expression data and shortly whole genome scans on a sub sample of 1,000 – 3,000 cases 14

15. ALSPAC: Record Linkage Linkage to health and administrative routinely collected records –Primary Care Maternity and Birth records –NHS/ONS Flagging and Tracing service Death notification & Cancer registration –Education records National Pupil Database (NPD) census and attainment records –GIS & Environmental Measures –ALSPAC Friendship Matrix 15

16. ALSPAC: Future Collections Continuation of data collection from the ALSPAC index children and their mothers 3 rd Generation Offspring pilot Fathers recruitment & first clinic Sibling recruitment Development of the biobank and genotype resource Expanded data linkage to routine records 16

17. ALSPAC: Principal Findings Verified the safety of the Back to Sleep campaign that led to the reduction in rates of cot death Findings led to a reformulation of topical creams to remove peanut oil Policy Impact –Changed US government advice re eating fish during pregnancy –Evidence of lack of change in social mobility Genetic & Epigenetic research –Helped identify common genetic variants that relate to traits such as obesity –Data used in exploration of new field of Epigenetics 17

18. ALSPAC: Data Access ALSPAC committed to moving towards open access solution –UK Data Archive - pilot data sets –MRC DSS - ALPSAC meta data Current access arrangements detailed on ALSPAC web site: www.bristol.ac.uk/alspac/sci-com/collab-policy/ 18

19. ALSPAC: further information www.bristol.ac.uk/alspac –Detailed summaries of the resource –Data access policy –Links to further information 19

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21. PEARL Project to Enhance ALSPAC through Record Linkage 21

22. PEARL: The PEARL Team A Wellcome Trust funded project –Part of the Electronic Patient Record (EPR) series of grants PI: John Macleod Other team members: –Andy Boyd –Kerry Humphries –Kate Angel –Lindsey Brown 22

23. PEARL: Benefits of Linkage Cost effective Comprehensive source of data Obtain data that is less subject to self-report or participation bias Inform strategies for dealing with missing observations May help avoid study fatigue 23

24. PEARL: Project Goals Obtain consent for and establish mechanisms of linkage Investigate challenges and develop generalisable solutions Demonstrate the value of linkage-based research through exemplar projects Establish a training programme to share these methods and insights with other researchers 24

25. PEARL: Data Sources Health data –Patient level primary care records –General Practice Research Database (GPRD) –Hospital admissions data (HES) Work and Pensions Longitudinal Study (WPLS) –Employer, benefits and income data Ministry of Justice –Criminal convictions and cautions records GIS (Geographic Information System) –Data to inform spatial analyses Education data –National Pupil Database (NPD), Further and Higher Education 25

26. PEARL: Governance Structures 26 ALSPAC NHS Other Data bodies o wners Executive NIGB Section 251 REC AL&EC ICOONS DWP DfE & BIS HMRC MoJ

27. PEARL: Research Governance Concerns: –Privacy & Cohort acceptability Trust, duty of care maintaining the long term relationship –Research ethics –Legislation Data Protection Act Data owners Balance: –Right of privacy against right of public goods 27

28. PEARL: Pseudonymisation Anonymisation –Is anonymisation possible in this context? Pseudonymisation –Removal of personal identifiers Restrict precision of geographical scale, date of birth –Assign new unique key number To each participant To schools/employers/health facilities etc Suppress/Transform small cell counts 28

29. PEARL: Pseudonymisation in practice Balance between privacy and utility Deductive disclosure still possible Does pseudonymisation meet the requirements of the DPA / data owners? 29

30. PEARL: ALSPAC Linkage Protocol ALSPAC will continue to Pseudonymise data ALSPAC will continue to mitigate risk through data usage agreements with data users ALSPAC will seek consent & meet fair processing requirements Governance & infrastructure to control for security risk –ISO27001 & HMG Security Policy Framework –Staff training Investigating governance frameworks & accreditation –NHS Information Governance Framework and Data Safe Havens Investigate technological solutions –DataSHIELD, SAIL 30

31. EUCCONET Data Linkage Workshop Bergen 15-17 th June Focus on linkage in Child Cohorts –Linkage theory –Governance and disclosure control –Consent –Exemplar projects

32. Questions? Andy Boyd ALSPAC Data Linkage Manager a.w.boyd@bristol.ac.uk 32