Transcript Showcasing ALSPAC as a resource for social and health researchers Andy Boyd

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
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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
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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
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ALSPAC: defining
characteristics
• Regional catchment area
– Permanent study center in Bristol
• Multi-generational
• Health and genetics ‘reputation’
– Extensive social measures
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ALSPAC: defining
characteristics
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Extensive biobank
Intensive and frequent follow-up
Used as a sampling frame
Expanding record linkage arrangements
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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
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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
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ALSPAC: The resource
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Questionnaires
Hands-on Clinical Assessments
Biological Samples
DNA & Genotyping
Record Linkage to routine information
Future Collections
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ALSPAC: Questionnaires
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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
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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
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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
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ALSPAC: Biological Samples
• Collected since pregnancy
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Blood
Urine
Hair
Nails
Teeth
Saliva
Placenta
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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
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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
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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
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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
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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/
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ALSPAC: further information
• www.bristol.ac.uk/alspac
– Detailed summaries of the resource
– Data access policy
– Links to further information
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PEARL
Project to Enhance ALSPAC through
Record Linkage
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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
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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
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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
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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
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PEARL: Governance
Structures
ALSPAC
NHS
Other
bodies
Data
owners
Executive
REC
ICO
ONS
DWP
AL&EC
NIGB
Section 251
HMRC
DfE & BIS
MoJ
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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
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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
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PEARL: Pseudonymisation in
practice
• Balance between privacy and utility
• Deductive disclosure still possible
• Does pseudonymisation meet the requirements of the
DPA / data owners?
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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
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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
[email protected]
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