Project to Enhance the ALSPAC (Avon Longitudinal Study of Parents and Children) cohort through Record Linkage


Acronym
PEARL
Lead investigator
Dr John Macleod, University of Bristol
Background

The Avon Longitudinal Study of Parents and Children (ALSPAC) provides the most detailed phenotypic, genotypic and environmental assessments of parents and their children across the life course of any comparable study available to scientists studying early life influences on health. To further strengthen the platform, ALSPAC is undertaking linkage to electronically held routine health and social information. This linkage will augment information collected through direct means, providing:

  • A cost-effective and comprehensive source of both retrospective and prospective measures of exposures and outcome status;
  • Validation of directly collected data, and cross-validation of data from different linkages, each potentially influenced by different biases;
  • A means of obtaining data whose measurement is less subject to self-report or participant bias.
Aims & objectives
To create a national standardised solution to the management of cohort studies. The study also aims to create a grid-based framework to address issues associated with data linkage and extraction, and longitudinal follow-up of patients across their healthcare institutions. Such issues include: Obtaining consent for, and establishing mechanisms of linkage between, ALSPAC study participants and routine sources of data on educational, social and health outcomes, including that held in primary care electronic patient records; Demonstrating the value of linkage-based research; Establishing a training programme to share these methods and insights with other researchers.
Study design

Data linkage in a cohort study, developing and testing methods to automatically find similar medical records in datasets.

PEARL will link data from:

  • Health records – Patient-level primary care records, general practice research database, hospital admissions data;
  • Department for Work and Pensions – Employer, benefits and income;
  • Ministry of Justice – Criminal convictions and cautions;
  • Geographic Information Systems, to inform spatial analysis;
  • Education data – National pupil database, further and higher education.

The study has two phases, homogenisation and linking. Homogenisation fills in missing data using the obtained predicted values. Linking uses similarity measures between the medical records.

Further information & publications
Start date
April 2009
End date
August 2016
Funders
Amount
£1,700,000