PEARL

Project to Enhance ALSPAC through Record Linkage

Kerry Humphries

Overview Summary of ALSPAC Existing data linkage PEARL Benefits of data linkage Aims/Data sources/Research

Governance/Consenting procedure/Pilot study

Beyond PEARL

What is ALSPAC?Avon Longitudinal Study of Parents and Children

Established in 1991 by Professor Jean Golding

Cohort study of children and their parents based in the former county of Avon (excluding Bath), England

Original design: “To determine ways in which the individual’s genotype combines with environmental pressures to influence health and development”

Study design

Eligibility criteria: Mothers resident in Avon and have an expected date of delivery between 1st April 1991 and 31st December 1992

Avon was broadly representative of the UK as a whole and has a relatively stable population

Core sample of 14,541 pregnancies resulting in 14,062 live born children

Current sample size

~ 8500 participated between ages 16-18

10 000 YP’s attended at least one clinic

Outreach clinics are helping to boost numbers and target young people from socially deprived areas

Existing linkage to health and administrative records

Flagging and Tracing data• Cancer and Death data• Birth records

Education data• National Pupil Database (NPD)

• School and Pupil level data

• Assessment data (E.g. G.C.S.E’s)

Other existing linkage

GIS (Geographic Information System)• Geographic location data

Friendship questionnaires• Linkage from ALSPAC collected data

PEARL

Benefits of data linkage in a cohort study

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

PEARL aims Obtain consent for and establish

mechanisms of linkage Investigate challenges and develop

generalisable solutions Demonstrate the value of linkage-based

research Establish a training programme to share

these methods and insights with other researchers

Examples of data sources Health data

• Patient level primary care and hospital admissions data. Cancer registry.

WPLS (Work and Pensions Longitudinal Study)• Employer, benefits and income data

Ministry of Justice• Criminal convictions records

GIS (Geographic Information System)• Data to inform spatial analyses

Education data• National Pupil Database (NPD), Further and Higher Education

Research governance Legislation Ethical External

Approval Data owners ALSPAC Ethics &

Law committee

NIGB

UoB

DPA

(ICO)

DWP

DfE & BIS

HMRC

MoJ

ONS

NHS IC

Primary Care

MCAREC

DWP

PNC Info Access Panel

Safe Haven

Safe Haven governance principals Approved researchers Pseudonymised data Security accreditation

• ISO 27001• HMG Security Policy Framework

PEARL consenting procedure

Ethical approval (LREC) Qualitative investigation into participants’

understanding and feelings towards data linkage (currently being written up)

Consenting procedure• Enrol ALSPAC cohort into the study in their own right

now they are adults• Send them an enrolment pack consisting of:

• Invitation letter/Summary leaflet/Detailed information booklet/Consent form (with SAE)

Pilot Study RCT - 2000 young people Primer postcard (1000) Main pack (In house and designed) Reminder 1 postcard Reminder 2

• Phone call/Text• Email• Postcard

Pilot study results so far....

As of 09/06/11 (more consent forms to include)

• 760 consent forms returned (37%) Yes to ALSPAC – 720 (95%)

• Blank – 13 (1%) / No – 27 (4%)

Yes to all data linkage options – 575 (76%) Mixed response to data linkage options

(some yes/some no/some blank – 155 (20%) No to all options – 30 (4%)

Pilot study results so far....

Numbers have dropped off but still receiving 5-10 consent forms a day

Designed packs elicit a quicker response

Telephone reminders had the greatest impact

Beyond PEARL

Extend data linkage to:• Mothers • Fathers• Siblings• Offspring

ALSPAC – Data access

ALSPAC committed to moving towards ‘open access’ solution

Current access arrangements detailed on ALSPAC web site:• www.bristol.ac.uk/alspac/sci-com/collab-policy/

www.bristol.ac.uk/alspac• Detailed summaries of the resource

• Data access policy

• Links to further information

PEARL Bristol

• John Macleod, George Davey Smith, Andy Boyd, Jonathan Sterne, Matthew Hickman, Andy Ness, Chris Salisbury, Rona Campbell, Sarah Purdy, Paul Gregg, John Henderson, Lindsey Brown, Kate Tilling, Hugh Annett, Dougal Darvill, Glyn Lewis, Anthony Phillips, Jonathan Onslow, Kerry Humphries, Kate Angel

Swansea• David Ford, Ronan Lyons

Dundee• Frank Sullivan

Leicester• Paul Burton, Martin Tobin

Norwegian Institute of Public Health

• Camilla Stoltenberg

IoP• Barbara Maughan

Exeter Peninsula • Melvyn Hillsdon

Birmingham/KCL• Richard Hobbs, Brendan Delaney, Adel

Taweel

ALSPAC Strategic Funding: PEARL Funding: