Journal article
Improving mutation notification when new genetic information is identified in research: A trial of two strategies in familial breast cancer
CE Wakefield, H Thorne, J Kirk, E Niedermayr, EL Doolan, K Tucker
Genetics in Medicine | NATURE PUBLISHING GROUP | Published : 2013
DOI: 10.1038/gim.2012.115
Abstract
Purpose: The Kathleen Cuningham Foundation Consortium for Research into Familial Aspects of Breast Cancer (kConFab) is a large-scale research study that notifies participants when new, personally relevant, information is discovered. In 2009, the (kConFab) instituted an intensive notification process to ensure at-risk individuals were effectively notified. This study (i) evaluated the impact of intensive notification on genetic testing uptake; (ii) identified those most likely to undergo testing postnotification; and (iii) identified those most likely to acknowledge that they had been notified. Methods: Clinical/demographic data were retrieved from the (kConFab) database. Logistic regression ..
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Grants
Awarded by National Breast Cancer Foundation and Cancer Australia
Awarded by Early Career Development Fellowship Grant from the Cancer Institute of NSW
Awarded by National Breast Cancer Foundation
Funding Acknowledgements
We thank all the kConFab research nurses and staff, the heads and staff of the Family Cancer Clinics, and the Clinical Follow-Up Study (funded 2001-2009 by NHMRC and currently by the National Breast Cancer Foundation and Cancer Australia no. 628333) for their contributions to this resource, and the many families who contribute to kConFab. kConFab is supported by grants from the National Breast Cancer Foundation and the National Health and Medical Research Council and by the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia, and the Cancer Foundation of Western Australia. C.E.W. is supported by an Early Career Development Fellowship Grant from the Cancer Institute of NSW (11/ECF/3-43).