Internet-driven, direct-to-patient engagement allows men to volunteer medical data, speed research
Patients and researchers team up to fight metastatic prostate cancer
Researchers at the Broad Institute of MIT and Harvard and the Dana-Farber Cancer Institute have launched the Metastatic Prostate Cancer Project, a patient-partnered initiative that encourages men with metastatic prostate cancer from across the United States and Canada to collaborate in research on the disease. So far, 220 men (from both Canada and 40 US states) have enrolled in the program.
Approximately 30,000 men die from advanced or metastatic prostate cancer every year, making prostate cancer the sixth-leading cause of cancer death in the United States, according to statistics from the National Cancer Institute. Approximately three million men are living with prostate cancer in the US, and more than 160,000 were newly diagnosed in 2017.
Both diagnosis and survival rates for metastatic prostate cancer vary a great deal, particularly across racial and ethnic backgrounds, and researchers still don’t fully understand why.
Conducted at the Broad in collaboration with Dana-Farber, patients, and nonprofit advocacy groups, the MPC project aims to partner with patients through internet-driven, direct-to-patient engagement that complements traditional cancer care. All data created by the program will be shared with the global biomedical community to rapidly accelerate the pace of discovery and expand our understanding of this disease.
"Many researchers have been working to understand the genetic basis of both early stage and advanced prostate cancer, but patients are rarely, if ever, involved," said Eliezer Van Allen, a Broad associate member and a genitourinary oncologist at Dana-Farber. "To answer many important questions about metastatic prostate cancer, we need to engage patients as partners. Together with patients, we want to create a research program that can fuel new discoveries, reveal why patients respond differently to treatments, and uncover new genetic targets so that we can help current and future generations of men."
Modeled after the Metastatic Breast Cancer Project, the MPC project team aims to connect with metastatic prostate cancer patients and their care providers to increase the number and diversity of patients.
"Every single patient has the power to make a difference,” said Van Allen. “Sometimes all it takes is just one patient who has an interesting genetic profile or an interesting clinical story, and that can spawn some of the most exciting discoveries."
Members of the MPC project team and patient advisory council visit the Broad sequencing facility. L-R: MPC computational biologist Stephanie Wankowicz, PAC member Joel Nowak, Eliezer Van Allen, PAC member Jan Manarite, MPC project manager Michael Dunphy. (Courtesy of Corrie Painter)
Easy to enroll, privacy protected
Patients anywhere in the US or Canada can join the project. To participate, patients are given the option of filling out a survey covering demographic information and medical history. 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 will receive a blood-biopsy kit as well.
All of this information is integrated. However, it is also de-identified so that patient privacy is fully protected. The data will be made available to researchers around the world via web portals in order to fuel their research programs. The team anticipates releasing new batches of data on a regular basis.
The MPC Project builds on the infrastructure, processes, successes, and lessons learned from two other patient-partnered cancer research programs launched by the Broad Institute: the Metastatic Breast Cancer Project, which has more than 4,300 participants; and the Angiosarcoma Project, which has nearly 300 participants.
All three projects share a core commitment of partnering closely with patients to speed both drug discovery and biological understanding of cancer.
"As with the MBC and Angiosarcoma projects, patients and advocates have had an important voice in every aspect of the MPC Project's development and design," said Broad associate director of operations and scientific outreach Corrie Painter, who plays key roles in all three projects. "Their perspectives and advice have been immensely valuable in teaching us how best to approach and partner with men with this disease, and making sure that our efforts resonate."
"We come into this project with a track record," Van Allen added. "We can point men with advanced prostate cancer to the exciting work that's being done with patients in these other programs to underscore the power of this partnership."
More information about the Broad Institute's three current "Count Me In" efforts — the Metastatic Prostate Cancer, Metastatic Breast Cancer, and Angiosarcoma projects — is available via broadinstitute.org/cmi.
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The Wall Street Journal: Medical researchers look to enlist patients as partners (subscription required)