File 39

The WA Family ConnectionsA link that connects people who belong to the same family (e.g. mother, father, sibling, cousin), provided as a list of pairs of related ROOTS and their relation type. Project has been operating since 2003. The project is an adjunct to the WA Data LinkageA complex technique for connecting data records within and between datasets using demographic data (e.g. name, date of birth, address, sex, medical record number). Also called ‘Record Linkage’ or ‘Linkage’. System (WADLSWestern Australian Data Linkage System: The Western Australian system used to connect available health and other related information for the WA population. This incorporates database tables holding demographic data and linkage keys, and the bespoke tools used by Linkage Staff to process, create, store and retrieve them.) and is governed by the same protocols and procedures. It aims to create an additional system of links that represent genealogicalRelating to the history of a person, family or group. relationships for the WA population, primarily using information from birth, death and marriage registrations. Its central purpose is as a research tool for use in conjunction with health dataCan refer to: (1) the demographic data used in the Data Linkage process; or (2) information pertaining to services provided to people or their clinical information (available only from Data Custodians, including via CARES). to study the inheritance of disease.

Phase 1 of the project involved creating genealogical links from information recorded on registrations that are available electronically (since 1974 for births, and 1984 for deaths and marriages), totalling 1.7 million records. Phase 2 (in progress) includes creating genealogical links from newly digitized records with an initial focus on the 0.5 million birth records dating back to 1945.

Research Capabilities

Population-based genealogies for extant populations are rare due to the challenges of developing and maintaining such a resource on a large scale. The combination of genealogy and WADLS health data for the WA population represent a unique opportunity to investigate the inheritance of human disease. The project can support research involving multi-generational pedigrees. Data may be used to assess the degree of relatedness of individuals within study samples, locate common ancestors, estimate genetic risk and describe the familial burden of comorbid conditions.

For further information, please contact Dr Emma Glasson at emma.glasson@health.wa.gov.au