CSC starts up new prostate cancer patient registry project


We have just heard that the Cancer Support Community (CSC) has initiated a major new patient registry specifically for men who have or have had prostate cancer. This registry has been initiated in collaboration with Us TOO International and ZERO — The End of Prostate Cancer.

For CSC, this new prostate cancer registry will be the 10th in a series of specialty registries addressing the experiences, concerns, and needs of men and women with a range of individual types of cancer. Other registries initiated by CSC include those for patients with breast cancer, multiple myeloma, chronic myeloid leukemia, chronic lymphocytic leukemia, lung cancer, and melanoma. CSC is an international nonprofit dedicated to providing support, education, and hope for people impacted by cancer.

According to CSC, by contributing data to this structured registry, men diagnosed and treated for prostate cancer will be able to

give back to others going through a similar experience. We are eager to learn more about the unique needs of this group so that we and others can create resources tailored specifically to men with prostate cancer and their loved ones.

The registry has apparently been developed with funding from Janssen Pharmaceuticals (an operating division of Johnson & Johnson) and Bayer.

Although many patients may have logged this type of personal information on web sites like Yananow and on our own social network in the past, we would still encourage all patients to contribute to this new registry moving forward because it will allow for the development of structured data analysis about patient experiences over time, and that will help us all to improve understanding about issues that — in particular — affect patients’ quality of life, and perhaps issues that affect quality of life of spouses, partners, other family members, and other caregivers as well.

3 Responses

  1. Impressive Site

    Thanks Sitemaster for highlighting this site!

    I just finished completing the rather long but thoroughly meaningful survey. It probably took me from 1 to 2 hours from start to finish. There is a convenient button for taking a break from the survey, and that can be done as many times and for as long as needed.

    The site appears to be well-managed, including privacy protection.

  2. Is anyone aware if this has been publicized by Us TOO or Zero? I may have just missed it. If so, please can you provide the link.

  3. I just finished the survey. I would say it took me about 3 hours.

    I definitely recommend that people plan to do this in multiple sessions with breaks in-between.

    Some of the questions were a bit hard to answer, because they wanted to know how you felt about “your doctor” or “your care team” or “your treatment decision”. In fact, I have had multiple treatments from multiple providers, and have different feelings about each. So I was not really sure how to answer. That is one respect in which I think the questionnaire could be improved.

    I originally was thinking of recommending this survey to my support group. But after seeing how long it took, I have to hesitate, because I am not really sure it is a good investment of their time. I think the questionnaire could benefit from being shortened.

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