Cancer Commons Partners with the Melanoma Research Foundation to Launch Online Patient Registry

Today Cancer Commons and the Melanoma Research Foundation announce an online patient registry to advance research for a cure.

For Immediate Release: January 17, 2014

 

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.”

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Patient’s Perspective: Erin Youngerberg’s Take on Melanoma


Erin Youngerberg was diagnosed with melanoma in October, 2010, at age 32 years. Well-traveled and an avid photographer, she grew up in Minnesota, went to college and worked in Milwaukee, then made her way east, living in Ohio and North Carolina before ending up in Jersey City, just outside of New York City. After her diagnosis, she started a blog to keep folks back home updated. Called ‘Melanoma and the City,’ it tells the whole story: from appointments at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City to various city adventures; from treatment side effects to recipes for quinoa and tacos. Erin has also found herself dedicated to spreading the word about melanoma awareness. We asked her to take us through her melanoma story. Continue reading…