Cohort Profile: The Western Australian Family Connections Genealogical Project

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The Western Australian Family Connections Genealogical Project was proposed by Dr John Bass and implemented in 2003. The project aim is to create and store a system of links representing genealogical relationships for the residents of Western Australia (WA) to be used as a research tool in conjunction with health data to help investigate familial factors in health and disease. The project exists as a supplementary system of links to the WA Data Linkage System (WADLS) that regularly links records across several population-based data sets. When used in conjunction with this extensive collection of health-related data, the genealogical properties can enhance genetic and familial research projects to, for example, assess the degree of relatedness between individuals within study samples, assist in locating common ancestors and allow estimates of genetic risk. WA has developed particularly strong capabilities in the linkage of population-based data over the past three decades. Since 1995 it has supported a Data Linkage System, which has the primary aim of creating, storing and retrieving electronic links between records from core population-based systems, originating as early as 1966, and totalling nine data sets: birth, death and marriage registrations, electoral roll, hospital morbidity, emergency department presentations, mental health information, midwives notifications and cancers. Probabilistic matching techniques with extensive clerical review are used to identify records for the same individuals within and between the data sets. Dynamic updates of links for entries that relate to the same individuals are stored in a master links file. All links are created, stored and managed by the WADLS, but the detailed data remain the responsibility of the separate data custodians. The Family Connections project was initially funded by the Medical and Health Research Council of Western Australia, and additional funding to support staff has been received from the Telethon Institute for Child Health Research. Salary for the project manager is provided as a Team Investigator on a National Health and Medical Research Council Capacity Building Grant (#254545) awarded to The University of Western Australia. Approval for Phase I of the WA Family Connections project was given by the Human Research Ethics Committee of The University of Western Australia, and by the Confidentiality of Health Information Committee which reviews applications for access to confidential data at the Health Department of Western Australia.