So just over 300 patients have already completed the survey that we put up on line last Friday. Thanks to all of you who have done that. And we’d really like to see if we can get to a total of something like 750 “with a little help from our friends”.
As we had said in our prior message, Prostate Cancer International (PCaI) along with two of our partners — CancerLife and the John Wayne Cancer Institute in Santa Monica, CA — will soon be asking men to participate in a new clinical trial about quality of life and living with prostate cancer.
This trial will allow prostate cancer patients to download a new type of app to mobile devices and then track all sorts of relevant information and how they are feeling over time. Trial participants will be able to (a) download reports; (b) share information with other participants in the trial; and (c) get feedback. A critical goal for us is going to be getting invitations out to the right types of patient, and by filling out the current survey you are helping us to define the primary target audience with a high degree of accuracy.
You can complete the very brief, seven-question survey if you click here. It only takes about 5 minutes of your time — at most.
And as we had mentioned before. … In the beginning we will only be able to enroll men into the trial who are located in the US, but we hope to expand the enrollment to men living in other countries where English is widely spoken, like Canada, Australia, England, South Africa, and European Unions nations. So long as you have been diagnosed with prostate cancer and can read and write in English, you are a potential candidate to participate in this trial either early or maybe a little later
Filed under: Uncategorized | Tagged: app, CancerLife, life, quality, trial |
THE "NEW" PROSTATE CANCER INFOLINK 
I’m happy to complete the survey and began it, but the current treatment status page didn’t cover my situation: newly-diagnosed and weighing options. I can’t say I’m on AS because that hasn’t been decided, and I didn’t want to skew the results.
Dear Art:
We may be splitting hairs here, but if you have been diagnoses and have “done nothing” to date, then arguably you are on “active surveillance” until you decide what you want to do!
Where would biochemical recurrence after radical prostatectomy fall on question #5? Right now just watching PSA at 0.13 with a PSADT of 30 months. Haven’t started SRT or ADT yet.
Dan:
The “best answer” to give would be B. Although you are concerned because your PSA seems to be rising, your PSA would have to reach 0.2 ng/ml for you to have formally failed your first-line treatment and be in biochemical recurrence.
Please understand that this survey is not intended to be “perfect”. I was only intended to give us a rough idea of how many men fell into the different types of group.
Thanks!
I also tried to complete the survey but stopped after discovering that the current disease status options didn’t include a category that fits my situation.
Dear Dave, please understand that if we had tried to provide detailed descriptions of every possible category of patient there would have been something like 40+ different options. We are only trying to get a rough idea of where men are on their “journey”. I would encourage you to please just pick the category that seems closest to your situation.