Research is integral to advancing scientific knowledge. Patients contribute to research every day, bettering advancements in the field for years to come.

A new research project, Count Me In, is aiming to develop more effective therapies for colorectal cancer patients by leveraging patients and their data. We interviewed Elana Anastasio, Associate Director of the Count Me In project, and Mary McGillicuddy, Clinical Project Manager at the Broad Institute of MIT and Harvard, who are leading this charge to learn more about their work, and how all patients can contribute to research, benefiting the colorectal cancer community for years to come.

Q: Can you please tell us about the Count Me In project?

A: Count Me In is a research initiative that enables cancer patients to directly transform cancer research and discovery. Any individual in the United States or Canada who has ever been diagnosed with colorectal cancer can share information about their experiences through completing surveys, and sharing biological sample(s) and copies of their medical records with researchers in order to speed the pace of discovery. 

The goal of Count Me In is to generate a large dataset of de-identified linked patient-reported, genomic, clinical, and molecular information that can be shared freely with the biomedical community. Every patient’s story holds a piece of the puzzle that can help us better understand colorectal cancer. By discovering the genes and the variants that drive cancer and sharing this data, we hope insights can be gained to develop more effective therapies.

Q: Who can participate in the project?

A: Anyone who has ever been diagnosed with colon or rectal cancer may participate in the Colorectal Cancer Project if they live in the U.S. or Canada. Patients who enroll for the project sign an online consent form; tell us about the institutions where they have received their care; and receive sample collection kits in the mail and share information about their experience, including diagnosis dates, treatments, and demographic information via surveys. The initial sign-up process (including registration, consent, and filling out the initial surveys) takes about 30 minutes and can be done from anywhere with internet access. Participants also provide samples (saliva, blood, and/or stool) if they choose to do so. Additional online surveys that vary in length around the participants’ diet and lifestyle, family history, and more will be available, but all are optional and can be started and returned to later if participants do not want to complete them in one sitting.

Q: Will patients receive any insight on the research at certain points in time?

A: Patients will receive insights on the research regularly via email updates and social media. We typically send project-wide updates quarterly via email, where we share updates on enrollment, conferences, and events our team will be attending; snapshots of project data; and more. Since we are a research study, we are not permitted to return individual results back to patients or inform on patients’ clinical care.

Q: Who can access the data? Will patient information be de-identified? What will the data be used for?

A: De-identified data is shared on publicly accessible platforms on a regular basis. Right now, Count Me In shares data on the and through the National Institutes of Health (NIH) and the National Cancer Institute (NCI). The site houses processed data, and anyone who accesses the website can browse it. The data shared on dbGapP and the NCI’s Genomic Data Commons is not processed, and therefore, requires additional researcher credentials. The data types that are shared are genomic sequencing data, clinical data from medical records, and survey data from patients. The de-identified data can be used by any researcher to add to their existing data and to make new discoveries.

Why is it important for the patient community to participate in research like the Count Me In project?

A: It is important to enable the patient community to participate in research like this so we can work together to generate data that represents all individuals with cancer. Typically, research is performed at large academic medical centers; therefore; the data and insights that are generated only represent a small portion of the population. In order to make our way to a more equitable future and make discoveries that will impact everyone, we must give everyone the opportunity to contribute their information and voice to research.

Q: How will the Count Me in project improve the quality of life of colorectal cancer survivors in the long run?

A: Our hope is that Count Me In can have an impact on the future of colorectal cancer by facilitating the discovery of new therapies and treatment strategies, with the ultimate goal of improving the lives of patients. 

Learn more about Count Me In, and how to participate.

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