Title: Showcasing ALSPAC as a resource for social and health researchers
1Showcasing ALSPAC as a resource for social and
health researchers
Andy Boyd The Royal Statistical Society 4th April 2011
2ALSPAC
- The Avon Longitudinal Study of
- Parents and Children
- A brief history introduction
3ALSPAC 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
4ALSPAC 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
5ALSPAC defining characteristics
- Regional catchment area
- Permanent study center in Bristol
- Multi-generational
- Health and genetics reputation
- Extensive social measures
6ALSPAC defining characteristics
- Extensive biobank
- Intensive and frequent follow-up
- Used as a sampling frame
- Expanding record linkage arrangements
7ALSPAC 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
8ALSPAC 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
9ALSPAC The resource
- Questionnaires
- Hands-on Clinical Assessments
- Biological Samples
- DNA Genotyping
- Record Linkage to routine information
- Future Collections
10ALSPAC 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
11ALSPAC 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
12ALSPAC 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
13ALSPAC Biological Samples
- Collected since pregnancy
- Blood
- Urine
- Hair
- Nails
- Teeth
- Saliva
- Placenta
14ALSPAC 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
15ALSPAC 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
16ALSPAC 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
17ALSPAC 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
18ALSPAC 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/
19ALSPAC further information
- www.bristol.ac.uk/alspac
- Detailed summaries of the resource
- Data access policy
- Links to further information
20(No Transcript)
21PEARL
- Project to Enhance ALSPAC through Record Linkage
22PEARL 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
23PEARL 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
24PEARL 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
25PEARL 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
26PEARL Governance Structures
- ALSPAC NHS Other Data
bodies owners
Executive
REC
ICO
ONS
DWP
HMRC
NIGB Section 251
ALEC
DfE BIS
MoJ
27PEARL 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
28PEARL 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
29PEARL Pseudonymisation in practice
- Balance between privacy and utility
- Deductive disclosure still possible
- Does pseudonymisation meet the requirements of
the DPA / data owners?
30PEARL 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
31EUCCONET Data Linkage Workshop
- Bergen 15-17th June
- Focus on linkage in Child Cohorts
- Linkage theory
- Governance and disclosure control
- Consent
- Exemplar projects
32Questions?
- Andy Boyd
- ALSPAC Data Linkage Manager
- a.w.boyd_at_bristol.ac.uk