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01-02-2015 | Professional Issues

American BRCA Outcomes and Utilization of Testing (ABOUT) Study: A Pragmatic Research Model that Incorporates Personalized Medicine/Patient-Centered Outcomes in a Real World Setting

Authors: Joanne Armstrong, Michele Toscano, Nancy Kotchko, Sue Friedman, Marc D. Schwartz, Katherine S. Virgo, Kristian Lynch, James E. Andrews, Claudia X. Aguado Loi, Joseph E. Bauer, Carolina Casares, Rachel Threet Teten, Matthew R. Kondoff, Ashley D. Molina, Mehrnaz Abdollahian, Lana Brand, Gregory S. Walker, Rebecca Sutphen

Published in: Journal of Genetic Counseling | Issue 1/2015

Abstract

Research to date regarding identification and management of hereditary breast and ovarian cancer syndrome (HBOC) in the U.S. has been confined primarily to academic center-based studies with limited patient engagement. To begin to understand and address the current gaps and disparities in delivery of services for the appropriate identification and optimal risk management of individuals with HBOC, we designed and have initiated the American BRCA Outcomes and Utilization of Testing (ABOUT) Study. ABOUT relies on a collaborative patient advocacy, academic and industry partnership to recruit and engage U.S. individuals who are at increased risk for HBOC and investigate their experiences, decisions and outcomes. It utilizes an extensive research infrastructure, including an interactive web-based data system and electronic interfaces for secure online participation and automated data exchange. We describe the novel recruitment approach that was designed for collaboration with a national commercial health plan partner to identify all individuals for whom a healthcare provider orders a BRCA test and mail to each individual an invitation to participate and study packet. The study packet contains detailed information about the study, a baseline questionnaire and informed consent for participation in the study, for release of relevant medical and health plan records and for ongoing research engagement. This approach employs patient-reported, laboratory-reported and health plan-reported outcomes and facilitates longitudinal engagement. We believe that the type of innovative methodology and collaborative framework we have developed for ABOUT is an ideal foundation for a patient-powered research network. This approach can make substantial contributions to identifying current and best practices in HBOC, leading to improved strategies for clinical care and optimal health outcomes among individuals with high inherited risk for cancer.

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Title: American BRCA Outcomes and Utilization of Testing (ABOUT) Study: A Pragmatic Research Model that Incorporates Personalized Medicine/Patient-Centered Outcomes in a Real World Setting
Authors: Joanne Armstrong
Michele Toscano
Nancy Kotchko
Sue Friedman
Marc D. Schwartz
Katherine S. Virgo
Kristian Lynch
James E. Andrews
Claudia X. Aguado Loi
Joseph E. Bauer
Carolina Casares
Rachel Threet Teten
Matthew R. Kondoff
Ashley D. Molina
Mehrnaz Abdollahian
Lana Brand
Gregory S. Walker
Rebecca Sutphen
Publication date: 01-02-2015
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 1/2015
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-014-9750-3

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American BRCA Outcomes and Utilization of Testing (ABOUT) Study: A Pragmatic Research Model that Incorporates Personalized Medicine/Patient-Centered Outcomes in a Real World Setting

Abstract

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Abstract

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