Terry Herbert and I were asked to post this on HW and YANA. This comes from the InfoLink and you are all welcome to participate:
Prostate Cancer International and The "New" Prostate Cancer InfoLink has been working with a consortium of major prostate cancer centers to help them get national patient feedback on a proposed, development-stage, patient-oriented data tracking system.
A series of pages on The "New" Prostate Cancer InfoLink have been developed that allows men (and their partners) to be "walked through" a series of sample pages, answer a simple survey and, most importantly, give detailed feedback on what they think about
the way the data are presented, other data they would like to see presented, etc.
You can see the early, draft materials if you go to prostatecancerinfolink.net/tips-tools/monitoring-system/
If you take the time to page through and answer the survey questions in the 10 sections you will see the types of data that are already planned:
-- Recovery of urinary function after treatment (your own would be compared to a peer group of "men like you")
-- Recovery of erectile function after treatment (your own would be compared to a peer group of "men like you")
-- Your projected chances of biochemical progression-free survival over time
-- Your projected chances of full recovery of erectile function and other factors.
It is not possible to enter any data yet, so you can’t get any answers to these probabilities for your own position because the project is still in its infancy, but Mike Scott believes (as I do) there is a huge opportunity here for the patient community to give input on what may well become a major data resource initiative over time.
So please get along there and vote and comment, as I have done already. It is not much effort, but the outcome could be great for those who come behind us.
Prostate Cancer Forum Co-Moderator