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Showcasing ALSPAC as a resource for social and health researchers

Showcasing ALSPAC as a resource for social and health researchers. ALSPAC. The Avon Longitudinal Study of Parents and Children A brief history & introduction. ALSPAC: Study History. Established by Professor Jean Golding Initial funding from the Department for the Environment

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Showcasing ALSPAC as a resource for social and health researchers

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  1. Showcasing ALSPAC as a resource for social and health researchers

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

  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 individual’s genotype combines with environmental pressures to influence health and development” Golding 2001

  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

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

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

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

  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

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

  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

  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

  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

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

  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

  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

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

  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

  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/

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

  20. PEARL Project to Enhance ALSPAC through Record Linkage

  21. 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. 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. 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. 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. PEARL: Governance Structures ALSPAC NHS Other Data bodies owners Executive REC ICO ONS DWP HMRC AL&EC NIGB Section 251 DfE & BIS MoJ

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

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

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

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