Boston and Alexandria, VA – ASCO’s CancerLinQ® and Count Me In announced today a new collaboration that aims to allow cancer researchers to learn from every patient with cancer, by actively engaging patients as part of the clinical research enterprise. CancerLinQ – a real world oncology data technology platform developed by the American Society of Clinical Oncology (ASCO) – collects and aggregates de-identified EHR data from oncology practices across the United States to advance cancer care through quality improvement and research. Count Me In, a non-profit research initiative of the Broad Institute of MIT and Harvard, the Emerson Collective, and Dana-Farber Cancer Institute, provides patients with a mechanism to participate in cancer research by sharing their unique, de-identified medical information and history with cancer researchers and investigators.
CancerLinQ will facilitate patient participation in clinical research by engaging its provider network to recruit and refer patients to the Count Me In program in the doctor’s office, at the point of care. Patients who enroll in Count Me In consent to share information about their cancer experience, copies of their medical records, and samples.
“The reality is that less than 5 percent of patients with cancer participate in clinical research, and as cancer researchers we must do better and give more patients the opportunity to participate in research,” said Sean Khozin, MD, MPH, Chief Executive Officer of CancerLinQ. “With CancerLinQ’s new collaboration with Count Me In, we’re democratizing patient participation in cancer research by allowing more patients with cancer, including those from marginalized communities who have historically been excluded from research, to contribute to cancer discoveries and propel progress against cancer.”
“Every patient with cancer should have the opportunity to participate in and contribute to cancer research,” said Nikhil Wagle, MD, President and Director of Count Me In. “Patients have the unique ability to accelerate cancer research in a way that no one else can. Together, Count Me In and CancerLinQ will continue to advance our collective mission to turn our health care system into a learning system, by letting patients with cancer anywhere share their information with researchers everywhere -- so that knowledge about every patient’s experience can benefit every other patient.”
CancerLinQ, one of the largest and most-diverse real-world-oncology databases, includes de-identified data from more than 2 million patients with cancer from all 50 states. The CancerLinQ network includes over 100 cancer centers and community oncology practices.
Since 2015, more than 10,000 patients with cancer have joined Count Me In and shared their unique medical information and history. Anyone with a history of cancer, living in the United States or Canada is eligible to enroll in Count Me In.
CancerLinQ® is a real-world oncology data platform developed by ASCO that collects and aggregates longitudinal EHR data from oncology practices throughout the United States. CancerLinQ improves the quality of patient care and accelerates discovery by securely compiling, harmonizing, analyzing, and de-identifying vast amounts of information on patient characteristics (e.g., molecular profiles, comorbidities), treatments, and long-term side effects. By using data from over six million patients in near real time, CancerLinQ can identify trends and associations between myriad variables, thereby enabling physicians to generate new hypotheses and apply those conclusions to improve care in real-world settings.
About Count Me In
Count Me In is a 501(c)3 nonprofit research initiative on a mission to make every patient's experience count in the effort to understand and overcome cancer. Founded in 2018 by Emerson Collective and Broad Institute of MIT and Harvard, and Dana-Farber Cancer Institute, Count Me In engages and empowers patients to participate in cancer research by donating medical records, genomic data and tumor samples for study. To learn more, visit JoinCountMeIn.org.
Founded in 1964, the American Society of Clinical Oncology, Inc. (ASCO®) is committed to making a world of difference in cancer care. As the world’s leading organization of its kind, ASCO represents nearly 45,000 oncology professionals who care for people living with cancer. Through research, education, and promotion of the highest-quality patient care, ASCO works to conquer cancer and create a world where cancer is prevented or cured, and every survivor is healthy. ASCO is supported by its affiliate organization, the Conquer Cancer Foundation. Learn more at www.ASCO.org, explore patient education resources at www.Cancer.Net, and follow us on Facebook, Twitter, LinkedIn, and YouTube.