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Title: Showcasing ALSPAC as a resource for social and health researchers


1
Showcasing ALSPAC as a resource for social and
health researchers
Andy Boyd The Royal Statistical Society 4th April 2011
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 individuals
    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
(No Transcript)
21
PEARL
  • Project to Enhance ALSPAC through Record Linkage

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

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

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

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

26
PEARL Governance Structures
  • ALSPAC NHS Other Data
    bodies owners

Executive
REC
ICO
ONS
DWP
HMRC
NIGB Section 251
ALEC
DfE BIS
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

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

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

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

31
EUCCONET Data Linkage Workshop
  • Bergen 15-17th 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_at_bristol.ac.uk
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