The MRF Partners with Cancer Commons to Launch Online Patient Registry

Fri, 2014-01-17
 
For Immediate Release: January 17, 2014
 
Contact: Lauren Smith
 

The Melanoma Research Foundation and Cancer Commons partner to launch online patient registry to advance research for a cure

Donate Your Data (DYD) is the first platform to collect open-access information that will be made available to patients, physicians and researchers

Washington, DC, and Palo Alto, California, January 17, 2014 – The Melanoma Research Foundation (MRF) and Cancer Commons today announce the launch of the Donate Your Data (DYD) Program, an online registry for melanoma patients and survivors. DYD encourages patients to anonymously share their cancer experiences to advance research and, in return, inform their own clinical care.

Melanoma is one of the fastest growing cancers. With a 1 in 50 lifetime risk of developing melanoma, nearly 77,000 Americans were expected to be diagnosed with the disease in 2013, resulting in over 9,400 deaths.

Through DYD, each melanoma patient records and updates personal disease characteristics in a private, secure online profile. Entries capture stage, treatments, molecular test results, side effects, and treatment responses. All data will be made freely available in de-identified form, giving doctors, researchers, and patients themselves an unprecedented resource to determine the best approaches to melanoma care, according to each patient’s unique clinical history.

“DYD aims to collect data from at least 10% of the approximately 1 million melanoma patients and survivors in the U.S., and even more worldwide,” says Shelby Moneer, Education Program Manager at the MRF. “Our partnership with Cancer Commons is an exciting new facet of our commitment to providing patient resources and supporting research into effective treatments and eventually, a cure for this disease.”

Based on the data they provide, patients receive customized news feeds and alerts to relevant clinical studies and trials, reports on any research that uses their data, and notifications concerning important research findings, all delivered through each patient’s personal DYD dashboard. Each patient can graphically track his or her melanoma journey on a timeline and will be able to selectively share it with physicians and other patients.

“Everyone who has been diagnosed with cancer has felt the fright and anguish of having to make life and death decisions without adequate information, data, or time,” says Marty Tenenbaum, PhD, Cancer Commons’ founder and chairman, and himself a stage IV melanoma survivor. “We are thrilled to collaborate with the MRF to provide this revolutionary resource, which empowers today’s patients to improve their own outcomes and accelerate research for the benefit of future patients. We also look forward to expanding the program to include all types of cancer by the end of 2014.”

Visit the DYD Program at: https://patients.cc/mrf.

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About Melanoma
Melanoma is one of the fastest growing cancers in the United States and can strike men and women of all ages, all races and skin types. With a one in 50 lifetime risk of developing melanoma, nearly 77,000 Americans are expected to be diagnosed with the disease in 2013, resulting in over 9,400 deaths. Melanoma is the most common form of cancer for young adults 25- to 29-years-old and the second most common cancer in adolescents and young adults 15- to 29-years-old.
 
The majority of melanomas occur on the skin; in fact, melanoma is the most serious type of skin cancer. Melanoma can also occur in the eye (ocular, or uveal melanoma), in mucous membranes (mucosal melanoma), or even beneath fingernails or toenails.
 
About the Melanoma Research Foundation
The Melanoma Research Foundation (MRF) is the largest independent organization devoted to melanoma. Committed to the support of medical research in finding effective treatments and eventually a cure for melanoma, the MRF also educates patients and physicians about prevention, diagnosis and the treatment of melanoma. The MRF is an active advocate for the melanoma community, helping to raise awareness of this disease and the need for a cure. The MRF’s website is the premier source for melanoma information seekers. More information is available at www.melanoma.org. Find the MRF on Facebook and Twitter.
 
About Cancer Commons
Cancer Commons is the first and only open access nonprofit that will use data shared by patients to fuel crucial research into life-saving treatments for all types of cancer. Through Cancer Commons’ Donate Your Data (DYD) Program, each patient's cancer journey can be tracked online and shared anonymously with doctors and researchers worldwide. For more information, visit http://www.cancercommons.org. Follow Cancer Commons on Facebook and Twitter.