Research on AS in management of prostate cancer: your input is important!


A diverse group of patients, patient advocates, patient spouses/supporters, physicians, and other researchers has come together, with funding support from the Patient Centered Outcomes Research Institute (PCORI), to plan a virtual conference for the fall of 2021. At that conference, we intend to discuss and identify new and evolving opportunities for research into the most appropriate, high-need, high-impact topics affecting the use of active surveillance (AS) for the management of favorable-risk forms of prostate cancer (i.e., low-risk and “favorable” intermediate-risk disease).

Our goal is to bring together patient, clinician, and academic input and thus jointly identify critical research topics that we hope will guide future research for years to come.

Initial patient and clinician input will be invaluable for helping set the agenda for this meeting.  The first stage of gaining this input begins today, with a request for interested persons to please fill out this BRIEF survey related to topics that YOU think are important to the future use of AS in the management of prostate cancer. We are seeking such input from patients, patients’ spouses/partners and supporters/caregivers, physicians, nurses and others.

While we expect the majority of persons providing input to this project will be based in the USA, we are interested in input to this project from persons based anywhere in the world.

You are also invited to the fall conference! So, if you are interested, please provide your email address at the end of the survey and we will make sure you get relevant updates.

This project is being managed by a research team based at the University of Maryland in Baltimore. The principal investigator is M. Minhaj Siddiqui, MD (a urologic oncologist based at the University of Maryland). The following is a complete list of the members of the advisory board to the project:

  • Carolyn J. M. Best, PhD, Director of Research, American Urological Association, Linthicum, MD
  • Tony Crispino, a prostate cancer patient and President, US TOO Las Vegas Chapter, Las Vegas, NV
  • Thomas Farrington, a prostate cancer patient and President, Prostate Health Education Network (PHEN), Quincy, MA
  • Joseph C. Gallo, a prostate cancer patient, and Member of the Board of Directors, Active Surveillance Patients International (ASPI), Waminster, PA
  • Arvin George, MD, Department of Urology, University of Michigan, Ann Arbor, MI
  • Prof. C. Daniel Mullins, PhD, Director, the PATIENTS Program, University of Maryland, Baltimore, MD
  • Prof. Christian P. Pavlovich, MD, PhD, Department of Urology, Johns Hopkins Medicine, Baltimore, MD
  • Prof. David Penson, MD, MPH, MMHC, Chairman, Department of Urology, Vanderbilt University, KY
  • Peter A. Pinto, MD, Urologic Oncology Branch, Center for Cancer Research, National Institutes of Health, Bethesda, MD
  • Prof. Christopher E. Saigal, MD, MPH, Department of Urology, UCLA School of Medicine, Los Angeles, CA
  • E. Michael D. Scott, President and Executive Director, Prostate Cancer International, Virginia Beach, VA
  • Judi Wolinsky, spouse of a prostate cancer patient, Chicago, IL

Should readers have any questions about this project, please feel able to contact the project coordinator, Andrelle Mathelier, at the University of Maryland.

5 Responses

  1. Took the survey. Thanks for bringing it to our attention. (Who are the 4 morons that gave this post a 1 star rating? Seriously?)

  2. I’m on 20 sessions of radiotherapy and suffering with the runs. Painful urination and lethargy. Five sessions to go then monitoring. Good stuff, has got me out and about during this COVID19 pandemic. My legs are working again. 💪.

    Great staff at the VELINDRE CANCER HOSPITAL, CARDIFF, WALES, UK. I’ll keep you all posted. After monitoring,I should know if chemo or excise is necessary.

    Good luck 👍to everyone out there.

    Mike

  3. Hi Walt. So there are a lot of people who don’t understand why active surveillance is a good management option for a lot of men with lower risk disease. They are entitled to their opinions!

  4. Yikes, How uninformed. Box of rocks. LOL. (I see the list has grown (facepalm).)

  5. I found that reading all the possible boxes to check was helpful in understanding the questions; they are coming at this as advocates of AS.

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