To Help Speed Up Cancer Research, Share Your Data With Scientists

December 21, 2018

Through a new program run by the nonprofit organization Count Me In, patients with cancer in the United States and Canada can share their medical information, personal experiences and tumor samples with researchers worldwide, who will use the information in studies without revealing patient names.

EVER WISH YOU COULD help speed the progress of cancer research? Now you can.

Through a new program run by the nonprofit organization Count Me In, patients with cancer in the United States and Canada can share their medical information, personal experiences and tumor samples with researchers worldwide, who will use the information in studies without revealing patient names.

The project’s goal is to collect information from 100,000 patients across the spectrum of cancer types, both common and rare, over the next several years. Four leading nonprofit organizations engaged in philanthropy, research and patient advocacy — Emerson Collective, Broad Institute of Massachusetts Institute of Technology and Harvard, Biden Cancer Initiative, and Dana-Farber Cancer Institute — will shepherd and steer the new organization.

The impetus behind the project is that patient information can help scientists develop new treatments and pinpoint who is most likely to benefit from various therapies, but much of these data are never collected because most patients are treated at community cancer centers that don’t participate in research. The current projects are:

• The Metastatic Breast Cancer Project (mbcproject.org), launched in October 2015. • The Angiosarcoma Project (ascproject.org), launched in March 2017.

• The Metastatic Prostate Cancer Project (mpcproject.org), launched in January 2018.

• The Gastroesophageal Cancer Project (gecproject.org), launched in October 2018.

“Although these research projects are not likely to personally help (patients), their experiences and voices matter and may help change the future for other patients in measurable ways,” said Corrie Painter, associate director of Count Me In and cancer researcher at Broad Institute. “These patient partners have helped us design our outreach to engage a more diverse set of people, make consent forms easier to understand and design entire studies from the ground up.”

Patients can visit JoinCountMeIn.org to learn more, sign up for an ongoing project or request updates on future launches.


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