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kConFab Cancer Genetics

dataset
posted on 28.06.2020 by Melbourne 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.

History

Institution name

Peter MacCallum Cancer Centre

Unit name

kConFab, research Dept, PeterMac

Principal contact name

Heather Thorne

Principal contact email address

heather.thorne@petermac.org

Dataset ID

www.kconfab.org

Available for research?

Yes

Collaborating institutions information

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

Study or collection type

Research database/databank

Data collection started

1997

Dataset still being added to?

Yes

Exports

Logo branding

Exports