Count Me In, a non-profit research initiative, has launched the Brain Cancer Project (BrainCancerProject.org), a patient-partnered effort that enables anyone in the USA and Canada who has ever been diagnosed with a primary brain cancer to collaborate in a research project aimed at accelerating discoveries for this disease.
Founded in 2018 by Dana-Farber, the Emerson Collective and Broad Institute of MIT and Harvard, Count Me In engages and empowers patients to participate in cancer research by donating medical records, genomic data and tumor samples for study.
The Brain Cancer Project will partner with patients through social media and advocacy groups in order to generate data that represents the spectrum of people affected by this disease. While the project is open to patients who are 18 or older, it will expand to include pediatric patients in the future. All data will be freely available to the global biomedical community.
In the United States, approximately 17,000 people die from brain cancer every year, making this one of the top 10 causes of cancer deaths in the United States, according to statistics from the National Cancer Institute. Approximately 166,000 people are living with brain cancer in the US, and more than 23,000 were newly diagnosed in 2018. Both diagnosis and survival rates for brain cancer vary a great deal among patients, and researchers still do not fully understand why.
“We want to do everything humanly possible to develop better treatments for people with brain cancer. Through this initiative, we will extend our understanding of the molecular changes that occur throughout the spectrum of brain cancers,” said Patrick Wen, MD, Director of the Center For Neuro-Oncology at Dana-Farber Cancer Institute, a founding member of Count Me In, and Professor of Neurology at Harvard Medical School.
Minderoo Foundation, a philanthropic organization based in Perth, Australia and established by Andrew Forrest AO and Nicola Forrest AO, is a key partner in this new project. Their generous financial support to this project underscores Minderoo Foundation’s commitment to increasing the availability of patient data and accelerating cancer research.
“Minderoo Foundation is incredibly excited about the potential of this new collaboration with Count Me In,” Mr. Forrest said. “Brain cancer remains a frightening diagnosis that we know far too little about. This collaboration will help expand CMI’s efforts in patient-partnered cancer research and, importantly, launch critical laboratory work to map the genetic vulnerabilities of various brain cancers. This new paradigm has the potential to unlock understanding, spark new, collaborative strategies for treatment and empower thousands of people to join this patient-led research revolution.”
Easy to Enroll, Built with Patients
Patients diagnosed with a primary brain cancer, such as glioblastoma, astrocytoma, or oligodendroglioma, can join the project. To participate, patients first fill out a survey covering demographic information and cancer history as well as a research consent form. Afterwards, they receive a kit in the mail for collecting a saliva sample so that researchers can compare the patient’s genetic information with tumor DNA. Some participants may receive a blood collection kit as well.
The project will generate anonymized genomic, clinical, and patient-reported data that will be shared as a comprehensive dataset with the entire research community in order to accelerate the development of future therapies. The data will be made available to enable researchers globally via scientific web portals to access and learn from it, so as to fuel their research programs and accelerate discoveries in cancer research. The team will release new batches of data on a regular basis.
The Brain Cancer Project was built with an advisory council comprised of patients and caregivers and builds on the infrastructure, processes, successes, and lessons learned from four other patient-partnered cancer research projects launched by Count Me In: the Metastatic Breast Cancer Project, the Angiosarcoma Project, the Metastatic Prostate Cancer Project, and the Esophageal and Stomach Cancer Project, which combined have almost 7,000 registered patients. In addition, input was gathered from scientists, clinicians, and advocacy partners to ensure that the project encompasses a wide variety of the brain cancer community. The project is proud to have the American Brain Tumor Association, the National Brain Tumor Society, Accelerate Brain Cancer Cure, and Oligo Nation as advocacy partners.
All Count Me In projects share a core commitment of partnering closely with patients to speed both drug discovery and biological understanding of cancer.
“Brain cancer is an insidious threat: the nature of the disease infiltrates areas of the brain responsible for language, memory, personality, motor function, and more. In short, brain cancer threatens to rob patients of who they are! The Count Me In Brain Cancer Project equips patients with an avenue to proactively face this disease by locking arms with researchers and taking action in a meaningful way. On a community level, the Count Me In Brain Cancer project promises to reveal new insights about this devastating disease; on a personal level, Count Me In recognizes the value of individual patients standing up and taking action! Few things are more rewarding than recognizing the value of individuals to move mountains though partnership,” said Adam Hayden, Project Advisory Council member.
"As with our previous projects, patients and advocates have had an important voice in every aspect of the BC Project's development and design," said Corrie Painter, Broad Institute Associate Director of Operations and Scientific Outreach, who plays key roles in all CMI projects. "Their perspectives and advice have been immensely valuable in teaching us how best to approach and partner with patients with this disease, and making sure that our efforts resonate."
About Count Me In
Count Me In is a 501(c)3 nonprofit organization 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.