Medical Societies, Advocacy Groups Develop Genetics Toolkit: Working together to improve patient care
CHICAGO, IL (Oct. 5, 2016) – In order to help families benefit from precision medicine, several professional medical organizations and patient advocacy groups have collaborated to develop a resource for healthcare providers and patients concerned with gynecologic cancers.
The Society of Gynecologic Oncology (SGO) convened experts from the American College of Obstetricians and Gynecologists (ACOG), National Society of Genetic Counselors, Bright Pink and Facing Our Risk of Cancer Empowered (FORCE), to develop the SGO Genetics Toolkit.
This unique partnership has resulted in a web-based resource addressing real and common issues surrounding hereditary risk assessment and genetic testing in women with or worried about gynecologic cancers.
“Identifying families who may have an inherited risk factor to develop cancer leads to potentially life-saving early detection, risk reduction, and prevention strategies,” said gynecologic oncologist Bethan Powell, MD, who led the collaborative effort. “Once a hereditary risk factor is identified, families may use this powerful knowledge to seek tailored action plans to help protect their health and improve outcomes.”
The toolkit includes a series of vignettes designed to help providers and patients understand the implications of a genetic test result for themselves and other members of their family. The toolkit dispels some common misconceptions around the genetics of gynecologic cancers and sheds light on often overlooked nuances of cancer genetic testing while also introducing resources to help families adjust and adapt to results of genetic tests.
“It is unique to have this many organizations come together with one goal in mind: to empower patients and providers to work together to improve health,” said SGO President Jeffrey M. Fowler, MD. “The efforts of these organizations demonstrate the value that can be achieved when patients and providers work together to create a meaningful resource.”
American College of Obstetricians and Gynecologists
The American College of Obstetricians and Gynecologists (The College), a 501(c)(3) organization, is the nation’s leading group of physicians providing health care for women. As a private, voluntary, nonprofit membership organization of more than 57,000 members, The College strongly advocates for quality health care for women, maintains the highest standards of clinical practice and continuing education of its members, promotes patient education, and increases awareness among its members and the public of the changing issues facing women’s health care. The American Congress of Obstetricians and Gynecologists (ACOG), a 501(c)(6) organization, is its companion organization. www.acog.org
Bright Pink is a national non-profit focused on the prevention and early detection of breast and ovarian cancer in young women. The organization’s mission is to save women’s lives from breast and ovarian cancer by empowering them to live proactively at a young age. Bright Pink’s innovative programs educate and equip young women to assess their risk for breast and ovarian cancer, reduce their risk, and detect these diseases at early, non life-threatening stages. Founded in 2007, Bright Pink strives to reach the 52 million women in the US between the ages of 18-45 with this life-saving education. Put Awareness In Action™ at BrightPink.org.
FORCE: Facing Our Risk of Cancer Empowered
No one should have to face hereditary breast and ovarian cancer alone. FORCE is the voice of the community affected by hereditary breast, ovarian, and related cancers; providing support, education and awareness to help those facing hereditary breast, ovarian and related cancers know their healthcare options and make informed decisions. The organization is the de facto advocacy leader in guiding critical research and policy issues that impact the HBOC community. For more information about FORCE and hereditary breast and ovarian cancer, please visit www.facingourrisk.org.
National Society of Genetic Counselors
The National Society of Genetic Counselors is the leading voice, authority and advocate for the genetic counseling profession, representing more than 3,500 health care professionals. The organization is committed to ensuring that the public has access to genetic services. www.nsgc.org.
Society of Gynecologic Oncology
The Society of Gynecologic Oncology (SGO) is the premier medical specialty society for health care professionals trained in the comprehensive management of gynecologic cancers. As a 501(c)(6) organization, the SGO contributes to the advancement of women’s cancer care by encouraging research, providing education, raising standards of practice, advocating for patients and members and collaborating with other domestic and international organizations. www.sgo.org.
Ellen J. Sullivan, MS, MSJ
Director of Corporate Communications and Advocacy
Society of Gynecologic Oncology
Foundation for Women’s Cancer