UCSF Launches Social Networking Site for Patients and Families with Hereditary Cancers

For Immediate Release May 14, 2013

UCSF Launches Social Networking Site for Patients and Families with Hereditary Cancers

San Francisco, CA—Genetic counselors at UCSF have created KinTalk.org, a social networking site that connects patients and families with Lynch Syndrome, allowing them to easily and securely share important health information.

Lynch Syndrome, or hereditary nonpolyposis colorectal cancer (HNPCC), is the most common type of hereditary colon cancer. Five percent of colon cancers fall under Lynch syndrome; 1 in 300 to 400 people has the condition. In Lynch Syndrome the risk of cancer is very high; lifetime risk can be as high as 80 percent, and cancers often occur at a younger age—many occurring before age 40 and even before age 30.

When a patient is determined, through genetic testing or a clinical diagnosis, to have Lynch syndrome, other family members should be notified so that they can be tested to see if they also carry the mutation. This topic can be sensitive, but distributing this information can save lives. A diagnosis of Lynch syndrome can greatly impact the medical management of an individual even if they have already had a diagnosis of cancer; however, the bigger benefit is to all the at risk relatives who don’t have cancer and with genetic counseling and testing can begin a cancer screening protocol to prevent or detect cancers at an early and treatable stage.

“We were motivated to develop KinTalk for Lynch syndrome because we understand that sharing genetic risk info is difficult and that the information was not always being shared. This is partially due to the lack of recognition and comprehension of the diagnosis by clinicians and families,” says Megan Myers, MS, genetic counselor at the Hereditary Gastrointestinal Cancer Prevention Program at UCSF. “We wanted to create a web-based tool that allows patients to share cancer risk information directly with their relatives via a secure website. We hope that patients will feel comfortable and confident in securely sharing their genetic information with family members—and ultimately that those family members will be able to understand Lynch syndrome and know what their next steps are in terms of genetic testing and screening.”

The KinTalk platform was created in partnership with OMNI Health Media’s CancerConnect platform, which provides cancer care providers with specialized communities and educational resources for all those affected by cancer. CancerConnect is the leading online destination for patients and caregivers seeking information and support in the wake of a cancer diagnosis, with over 15,000 members having actively engaged in the platform, CancerConnect is the leading social media community for patient and their caregivers.

About KinTalk: The mission of KinTalk is to increase family communication of Lynch syndrome in an effort to reduce the burden of cancers in families with Lynch Syndrome. Kintalk provides an innovative, user-friendly, online communication tool for people with Lynch Syndrome. KinTalk enables people diagnosed with Lynch Syndrome to share critical genetic risk information with their at-risk relatives in a safe and secure online environment. KinTalk provides a forum where accurate and up to date information is shared, questions are answered, and family members learn if they are at risk for Lynch Syndrome. Kintalk aims to simplify what can sometimes be a difficult task—telling family members about hereditary cancer.

About OMNI Health Media: OMNI Health Media (OMNI) is a leading multi-media publisher of health-related information produced specifically for consumers. Each month, OMNI’s content, which focuses on women’s health and wellness, cancer, and rheumatoid arthritis, reaches over 1.5 million people through its print and digital platforms. Topical programming is delivered to large cancer centers such as The University of Kansas, Dana-Farber Cancer Institute, Seattle Cancer Care Alliance, and Memorial Sloan-Kettering Cancer Center, as well as to over 2700 physicians’ practices. In print, OMNI publishes Women, an award-winning quarterly magazine devoted to covering health and wellness issues important to women. OMNI’s digital platforms include awomanshealth.com, the companion website for Women; theRAconnection.com, a site devoted to rheumatoid arthritis and its treatments; and cancerconnect.com, an oncology information resource center and social network portal for cancer patients and their caregivers. OMNI Health Media was established in 1996 and has offices in Sun Valley, Idaho, and Fort Worth, Texas.

About CancerConnect:CancerConnect.com is the leading social network for cancer patients, their friends, and family. This unique online application was developed by OMNI Health Media and combines a robust information platform consisting of current comprehensive information on cancer with a social network. It is populated with rich content to support the many ongoing needs of individuals battling cancer and is comprised of communities of individuals with similar interests in the area of cancer. The CancerConnect application is also available as a fully functional “private label” social network for people with cancer, their caregivers, and others who are interested in staying up-to-date about the set of diseases known as cancer. CancerConnect is used by Memorial Sloan-Kettering Cancer Center, Roswell Park Cancer Inst., The Ohio State James Cancer Inst., Dana Farber, and other leading centers. CancerConnect is licensed to hospitals and cancer clinics to create community and provide support for patients in a safe, secure environment while undergoing treatment and importantly when they return home so they can stay connected to the cancer center and their support.

Contact chweaver@omnihealthmedia.com