posted on 2020-06-28, 00:40authored byMelbourne Academic Centre for Health (MACH)
kConFab brings together geneticists, clinicians, community representatives, surgeons, genetic counsellors, psychosocial researchers, pathologists and epidemiologists from all over Australia and New Zealand who believe the causes and consequences of familial predisposition to breast cancer can be understood only by a concerted national effort at both the basic and clinical level. In 1997, kConFab, with the help of the Family Cancer centres in Australia and New Zealand began enrolling families with a strong history of breast and breast/ovarian cancer. Genetic, epidemiological, medical and psychosocial data collected from these families by kConFab nurses and researchers are stored in a de-identified fashion in a central relational database. Biospecimens collected from family members are used to characterise germ-line mutations in predisposing genes such as BRCA1 and BRCA2. kConFab has accumulated data on more than1850 multigenerational, multicase kindreds. kConFab itself is not a research organisation in the usual sense, but rather provides a resource upon which researchers can draw. The aims of the consortium are to make data and biospecimens widely available to researchers for use in peer-reviewed, ethically-approved funded research projects on familial aspects of breast cancer. At present, kConFab is supplying biological specimens and data to more than 186 research projects world wide.
kConFab itself is not a research organisation in the usual sense, but rather provides a resource upon which researchers can draw. The aims of the consortium are to make data and biospecimens widely available to researchers for use in peer-reviewed, ethically-approved funded research projects on familial aspects of breast cancer. At present, kConFab is supplying biological specimens and data to more than 186 research projects world wide.
Number of people/participants
20,000 participants over the age of 18 years
Data source
Clinical
Research
Data source details
From all participants we collect relevant clinical information. The T&Cs associated with researchers accessing our resource requests that research results are passed back to us on publication and/completion of a project. These results are flagged in our database as research generated and linked to a researcher and their specific project