NPR Covers Cancer Commons

CommonHealth, a blog affiliated with Boston’s NPR news station WBUR, recently posted an interview with Cancer Commons founder Marty Tenenbaum. Reporter Rachel Zimmerman caught up with Marty after a talk he gave at MIT in Cambridge. Marty told her his personal story, explained why Cancer Commons is collecting stories from other patients, and placed Cancer Commons’ efforts in the context of rapidly evolving understanding of the science behind cancer.

A quote from Marty: ” ‘We’re patient focused and science based; Our mission is to aggregate and analyze data, to provide patients with the best information — up-to-the-moment, personalized, and actionable to help them make informed decisions…like a Lonely Planet guide to cancer.’ ”

Read the full post here: http://commonhealth.wbur.org/2014/02/can-we-use-the-crowd-to-beat-cancer-seeking-patient-data-to-help-save-lives


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.”

Continue reading…


The Scientist Discusses Cancer Commons in Self-Tracking Article

Reporter Kerry Grens mentions Cancer Commons in a recent article in The Scientist. The piece explores the trend of self-tracking—monitoring one’s health over time using a variety of cutting-edge and traditional procedures, including genotyping, gut microbiome sequencing, hormone level measurement, heart rate variability tracking, weight measurement, and more. From the article:

“To further research, organizations have tapped into people’s interest in sharing personal data. Cancer Commons, a large network of cancer researchers, appeals to patients and their physicians to submit individual data on treatment, cancer genotype, and outcomes.”

Read the full article here.


Cancer Commons in The Journal of Oncopathology

Cancer Commons is mentioned in a recently-published paper in The Journal of Oncopathology. In Crowdsourcing for Science and Medicine: Progress and Challenges, Sheryl Torr-Brown, PhD, writes:

“Another open source data collection effort to improve patient care is Cancer Commons, a nonprofit science initiative, comprised of an elite group of volunteer physicians and scientists, who collect patient data and make it broadly accessible for analysis. The initiative has already published a molecular disease model for lung cancer that is online and widely accessible.”

Read the paper here.


Video: Cancer Survivor Sharon Anderson on the Importance of Patient-Donated Data


In 2002, Sharon Anderson was diagnosed with a rare form of cancer called leiomyosarcoma (LMS). She joined an online discussion group to explore treatment options with other LMS patients, and tried a drug typically used for breast cancer. Her treatment was successful. In the video above, she tells us how she helped fellow LMS patients gather data about their own tumors and share it with a researcher. The resulting cancer vaccine is now in a phase I clinical trial. Continue reading…