A pioneering effort in patient-partnered cancer research enters a new phase
Count Me In’s legacy of data and resources will usher in a new way of doing research on other diseases and continue to fuel cancer studies around the globe.
In 2015, an innovative research initiative called Count Me In launched to give every patient with cancer, no matter where they lived, a way to contribute directly to research and help accelerate advances that could one day lead to new treatments.
Since then, the collaboration between the ӳý, the Dana-Farber Cancer Institute, and the Emerson Collective partnered with more than 12,000 people with cancer from across the U.S. and Canada. The participants shared their medical information, DNA samples, and their voices with cancer researchers. Dozens of cancer researchers have used that de-identified data to make new discoveries about the genetic roots of a wide range of cancer types, citing Count Me In’s own research papers hundreds of times.
Now, the initiative is shifting focus to empower a new wave of discovery, by enabling more investigators to conduct patient-partnered research in cancer and other diseases including rare disease, and by ensuring that data, samples, and insights already generated will continue to help deepen the understanding of cancer.
A new beginning for patient-partnered research
Count Me In first began as a single project focused on metastatic breast cancer, and the team soon launched more efforts aimed at other cancers and rare illnesses. Enrollment has now completed for the following projects: Angiosarcoma Project, Brain Tumor Project, Colorectal Cancer Project, Esophageal and Stomach Cancer Project, Metastatic Breast Cancer Project, Metastatic Breast Cancer Project in Spanish, and Metastatic Prostate Cancer Project.
Patients can still enroll in projects focused on translocation renal cell carcinoma () and pediatric hepatocellular carcinoma (). In addition, enrollment for the and projects, which were funded through a National Cancer Institute grant modeled after Count Me In’s approach, will remain open until December 12, 2025.
Count Me In will now focus on releasing data into repositories readily accessible to researchers and ensuring that this valuable information continues to advance science. The team recently joined , and together they will also work with researchers at the ӳý and beyond who want to initiate patient-partnered studies in cancer and other illnesses.
“We can utilize the lessons we’ve learned and the skills, infrastructure, and relationships that we've built over the years to further engage with other communities,” said Elana Anastasio, one of the first Count Me In project managers and now director of patient-partnered solutions for ӳý Clinical Labs.
“The merger of our teams represents a new beginning,” said Niall Lennon, chief scientific officer and chair of the board of ӳý Clinical Labs and an institute scientist at the ӳý. “We’ll continue to make the Count Me In datasets available, launch new projects built on the same principles, and apply the ӳý’s cutting-edge technology to accelerate discoveries. Most importantly, we’ll honor what patients taught us: that they don’t just want to be subjects of research, they want to be partners in it.”
The success of Count Me In efforts illustrates the benefits of connecting clinicians, advocacy groups, and patients, not only as study participants but as partners in developing study protocols and materials. Since 2015, more than 12,000 individuals living with cancer have enrolled, and more than 150 advocacy groups have been partners.
Scientists analyzing Count Me In data have discovered why some cancers are harder to treat or more aggressive. Their work has revealed, for example, mutations that allow tumors to resist certain drugs and other mutations occurring more in tumors that have spread versus those that haven’t. Other research powered by Count Me In data has shed light on cancers that hadn’t been well studied, such as a study on angiosarcoma that pointed to new ways to treat some patients with the rare cancer.
In addition, Count Me In led a wave of patient-partnered studies over the past decade. “We’ve proven that patients are eager to contribute to research,” said Diane Diehl, former director of scientific operations with Count Me In and now head of internal business development for the ӳý Genomics Platform. “And we’ve shown that we can do this and we can expand, especially in rare diseases where you won't have enough people in any one geographic location.”
Team members recognize that this work is only possible with the generous contributions and partnerships of people living with cancer and their families. “It's so important to have tissue samples and other data from patients so the world can move forward toward a cure,” said Kyle Brewington, a patient participant in the Osteosarcoma Project.
The team is also focused on engaging with new scientific collaborators to help them do more patient-partnered research. “We are hoping to take on new projects,” said Diehl. “If you're interested in doing this type of research, come talk to us.”
Researchers interested in collaborating on patient-partnered research are invited to contact genomics@broadinstitute.org to learn more.
