caa a22 4500 605544123 CHVBK 20210128100930.0 cr unu---uuuuu 210128e20150201xx s 000 0 eng 10.1007/s10897-014-9750-3 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9750-3 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 [Elektronische Daten] [Joanne Armstrong, Michele Toscano, Nancy Kotchko, Sue Friedman, Marc Schwartz, Katherine Virgo, Kristian Lynch, James Andrews, Claudia Aguado Loi, Joseph Bauer, Carolina Casares, Rachel Teten, Matthew Kondoff, Ashley Molina, Mehrnaz Abdollahian, Lana Brand, Gregory Walker, Rebecca Sutphen] 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. National Society of Genetic Counselors, Inc., 2014 Hereditary breast and ovarian cancer (HBOC) nationallicence BRCA1 nationallicence BRCA2 nationallicence BRCA nationallicence Genetic testing nationallicence Breast cancer nationallicence Ovarian cancer nationallicence Armstrong Joanne Women's Health, Aetna, Hartford, CT, USA aut Toscano Michele Women's Health, Aetna, Hartford, CT, USA aut Kotchko Nancy Women's Health, Aetna, Hartford, CT, USA aut Friedman Sue Facing Our Risk of Cancer Empowered, Inc (FORCE), Tampa, FL, USA aut Schwartz Marc Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC, USA aut Virgo Katherine American Cancer Society, Inc, Atlanta, GA, USA aut Lynch Kristian Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut Andrews James School of Information, University of South Florida, Tampa, FL, USA aut Aguado Loi Claudia Department of Child and Family Studies, University of South Florida, Tampa, FL, USA aut Bauer Joseph American Cancer Society, Inc, Atlanta, GA, USA aut Casares Carolina American Cancer Society, Inc, Atlanta, GA, USA aut Teten Rachel Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut Kondoff Matthew Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut Molina Ashley Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut Abdollahian Mehrnaz Department of Industrial and Management Systems Engineering, University of South Florida, Tampa, FL, USA aut Brand Lana School of Information, University of South Florida, Tampa, FL, USA aut Walker Gregory American Cancer Society, Inc, Atlanta, GA, USA aut Sutphen Rebecca Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/1(2015-02-01), 18-28 1059-7700 24:1<18 2015 24 10897 https://doi.org/10.1007/s10897-014-9750-3 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9750-3 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Armstrong Joanne Women's Health, Aetna, Hartford, CT, USA aut NATIONALLICENCE 700 1- Toscano Michele Women's Health, Aetna, Hartford, CT, USA aut NATIONALLICENCE 700 1- Kotchko Nancy Women's Health, Aetna, Hartford, CT, USA aut NATIONALLICENCE 700 1- Friedman Sue Facing Our Risk of Cancer Empowered, Inc (FORCE), Tampa, FL, USA aut NATIONALLICENCE 700 1- Schwartz Marc Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC, USA aut NATIONALLICENCE 700 1- Virgo Katherine American Cancer Society, Inc, Atlanta, GA, USA aut NATIONALLICENCE 700 1- Lynch Kristian Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut NATIONALLICENCE 700 1- Andrews James School of Information, University of South Florida, Tampa, FL, USA aut NATIONALLICENCE 700 1- Aguado Loi Claudia Department of Child and Family Studies, University of South Florida, Tampa, FL, USA aut NATIONALLICENCE 700 1- Bauer Joseph American Cancer Society, Inc, Atlanta, GA, USA aut NATIONALLICENCE 700 1- Casares Carolina American Cancer Society, Inc, Atlanta, GA, USA aut NATIONALLICENCE 700 1- Teten Rachel Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut NATIONALLICENCE 700 1- Kondoff Matthew Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut NATIONALLICENCE 700 1- Molina Ashley Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut NATIONALLICENCE 700 1- Abdollahian Mehrnaz Department of Industrial and Management Systems Engineering, University of South Florida, Tampa, FL, USA aut NATIONALLICENCE 700 1- Brand Lana School of Information, University of South Florida, Tampa, FL, USA aut NATIONALLICENCE 700 1- Walker Gregory American Cancer Society, Inc, Atlanta, GA, USA aut NATIONALLICENCE 700 1- Sutphen Rebecca Morsani College of Medicine Epidemiology Center, University of South Florida, 3650 Spectrum Blvd, Suite 100, 33612, Tampa, FL, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/1(2015-02-01), 18-28 1059-7700 24:1<18 2015 24 10897