Article
Improving mutation notification when new genetic information is identified in research: a trial of two strategies in familial breast cancer.
Genetics in medicine : official journal of the American College of Medical Genetics - 1 Mar 2013
Wakefield Claire E, Thorne Heather, Kirk Judy, Niedermayr Eveline, Doolan Emma L, Tucker Kathy
Abstract excerpt
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...
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