The National Proactive Surveillance Network, the world's first online medical database designed to help men track the progression of their prostate cancer while avoiding complications from overtreatment, launches today.
A project of the Prostate Cancer Foundation, the Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute and Johns Hopkins, the National Proactive Surveillance Network will allow men diagnosed with slow-growing forms of the disease to track their disease in a secure, interactive web-based patient portal.
"Recently, new research has estimated that as many as 50 percent of newly diagnosed prostate cancer patients have a form of the disease that is so slow-growing that it often does not pose a threat to the life or long term health of the patient," said Stuart Holden, MD, director of Cedars-Sinai's Louis Warschaw Prostate Cancer Center and medical director for the Prostate Cancer Foundation. "As a result, a growing number of prostate cancer patients are deciding that the best course of action for them may be to defer initial treatment until it can be determined whether they, in fact, have the more aggressive or less aggressive form of the disease."
Traditionally, men diagnosed with early-stage prostate cancer choose immediate treatment, such as surgery or radiation. Such aggressive treatment can result in complications such as impotence and incontinence, diminishing quality of life while not increasing the patient's lifespan, said Holden, who also holds the Warschaw, Robertson, Law Families Chair in Prostate Cancer at Cedars-Sinai.
That recognition has led some doctors offer patients a new option: "Proactive surveillance" - also known as "watchful waiting" or "active surveillance". In proactive surveillance, patients thought to have early-stage or slow-growing forms of the disease are closely monitored. If a patient's cancer accelerates, then more aggressive treatment options can be safely employed.
"We aren't advocating that any patient choose proactive surveillance," said Edwin M. Posadas, MD, medical director of the Urologic Oncology Program at Cedars-Sinai's Samuel Oschin Comprehensive Cancer Institute. "But if a patient and his doctor think this is the right course for that particular patient, then he can opt in and help medical science collect the invaluable data that scientists need to develop new tests and new treatments."
Patients who opt into joining the National Proactive Surveillance Network would undergo yearly prostate biopsies, answer extensive lifestyle and nutrition questionnaires and record their medical histories. Changes in their disease would be tracked online, allowing patients to decide whether and/or when to change the course of their treatment. The Network will collect and sort data blindly—with absolutely no patient name association—so researchers can analyze trends as well as patient commonalities and differences.
Patient samples, including biopsy tissue, blood and urine, also will be analyzed and banked by Johns Hopkins Medicine on the east coast and Cedars-Sinai Medical Center in the west and used in future prostate cancer studies. This will be the first comprehensive clinical data and tissue collection from a group of men with early-stage, low-volume prostate cancer. Researchers also will be able to examine and test the tissue to discover critical changes which can indicate whether patients have slow- or fast-growing forms of prostate cancer.
"This database will eventually give us a better way to predict which men benefit from treatment and which men will not be harmed by choosing to defer treatment," Holden said. "Whether to undergo initial treatment or to engage in proactive surveillance is a personal decision that a patient makes after consulting with their own doctors and family members. For those who choose to wait and monitor their condition, the National Proactive Surveillance Network will be a tremendous resource. And for medical professionals, this program will enable us to more effectively treat patients while avoiding complications."
Prostate Cancer Foundation