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ALSPAC and PEARL_ Project to Enhance ALSPAC ... - bristol.ac.uk

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ALSPAC and PEARL_ Project to Enhance ALSPAC ... - bristol.ac.uk Powered By Docstoc
					   Showcasing ALSPAC as a
resource for social and health
         researchers
              Andy Boyd

          The Royal Statistical
                 Society
             4th April 2011
         ALSPAC
The Avon Longitudinal Study of
    Parents and Children

 A brief history & introduction




                                  2
      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
                                                        3
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
           ALSPAC: defining
            characteristics
• Regional catchment area
   – Permanent study center in Bristol
• Multi-generational
• Health and genetics ‘reputation’
   – Extensive social measures




                                         5
            ALSPAC: defining
             characteristics
•   Extensive biobank
•   Intensive and frequent follow-up
•   Used as a sampling frame
•   Expanding record linkage arrangements




                                            6
          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




                                                       7
       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
       ALSPAC: The resource
•   Questionnaires
•   Hands-on Clinical Assessments
•   Biological Samples
•   DNA & Genotyping
•   Record Linkage to routine information
•   Future Collections




                                            9
      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
             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
             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
 ALSPAC: Biological Samples
• Collected since pregnancy
   –   Blood
   –   Urine
   –   Hair
   –   Nails
   –   Teeth
   –   Saliva
   –   Placenta




                              13
 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
 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
 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




                                                     16
  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
      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
 ALSPAC: further information
• www.bristol.ac.uk/alspac
   – Detailed summaries of the resource
   – Data access policy
   – Links to further information




                                          19
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

 AL&EC        NIGB                  HMRC
            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
    Questions?
         Andy Boyd
ALSPAC Data Linkage Manager
   a.w.boyd@bristol.ac.uk




                              32

				
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