Survey Database

Post by **webslave** » Wed Jan 29, 2003 10:52 pm

Note: This survey is suspended for analysis of data (we have quite a lot).

The poster Hepcat and I are collaborating on getting the world's first online CPPS/male IC longterm survey database up and running. Watch this space!

Post by **webslave** » Tue Feb 18, 2003 9:18 pm

The Survey is now available. Please take a few minutes to help us build up a database of information to help researchers!

+++ Take the Survey here +++

Clark · Post by **Clark** » Tue Feb 18, 2003 11:21 pm

webmaster wrote:The Survey is now available. Please take a few minutes to help us build up a database of information to help researchers!

+++ Take the Survey here +++

great idea

I just took it - anxious to see the results when you have a big enough sample

alprost · Post by **alprost** » Thu Feb 20, 2003 10:22 am

Webmaster, I think the survey is a great idea, but just a couple of points I noticed when I tried to fill it out:

'Have you been diagnosed with Chronic Prostatitis, Chronic Pelvic Pain Syndrome or Interstitial Cystitis?'
----I've been diagnosed with both CP and CPPS. By that I mean that I had prostatitis, as defined by having an inflamed prostate, but I don't have this anymore. I now have CPPS, which has obviously been caused by prostatits. I think a problem here is that Prostatitis and CPPS are thought of by many as being one and the same. I also thought like this untill recently. I now beleive that prostaitis is one of many possible causes of CPPS, not CPPS itself. I have came to this conclusion by reading about various Chronic Pelvic pain conditions in women, and beleive thre is a lot we can learn from studying comparable conditions in females.

'Indicate the locations of pain currently most bothersome'
-----One of the key sites of my pain is the Coccyx, which isn't listed. Might it be an idea to list this? In the meantime I've ticked the 'sacral region' box.

'If medications, which ones have helped improve your overall quality of life?'
----------The only one in my case which has had a significant impact has been Doxyxycline, but there is no box to check. However this was only effective in relation to the symptoms of prostaitis, and has absolutely no effect on my CPPS symptoms.

Like I said, the survey is a great idea, but I felt I needed to make you aware of the above points as they have been integral to my own case.

I hope that everyone who visits this site takes the time to fill out the survey, and that the results lead to a better understanding of this disease.

Regards,
Al.

alprost · Post by **alprost** » Thu Feb 20, 2003 11:01 am

alprost wrote:and that the results lead to a better understanding of this disease.

Sorry - I should have said 'these diseases'.

Old Habits die hard

Post by **webslave** » Thu Feb 20, 2003 3:24 pm

The question was what were you diagnosed with, not what have you got. As for what helped the most, perhaps we need a box for antibiotics. Currently you can put that data into the "other" category.

Post by **webslave** » Tue Feb 25, 2003 3:13 pm

Hepcat is updating the survey with your feedback and it should be available again soon with extra questions. I'll announce the re-opening. Then, please re-take the survey if you have the time.

Post by **webslave** » Sun Mar 02, 2003 11:47 pm

The survey is open again! Take it here:

http://24.70.71.8/

Hepcat · Post by **Hepcat** » Sun Mar 02, 2003 11:53 pm

The survey is back up and very comprehensive now.

Your enthusiasm and input really spurred us on to make the best possible tool for describing ourselves.

I strongly encourage everyone to take the time to fill it out.

With enough responses we will really begin to paint a portrait of the CP/CPPS sufferer and be able to offer some concrete answers to many of the questions often posted here.

To those who took the time to fill it out last time, your contribution is really appreciated. And since your such generous types I'm certain you won't mind forgiving us and giving it another go.

Just remember to delete the 24.70.71 cookie from your folder or you wil be denied access.

Thanks!

Dan in T.O. · Post by **Dan in T.O.** » Mon Mar 03, 2003 10:09 pm

OOOPS.
I hit "enter" by mistake after answering the first question and the survey seems to have been sent off as is I had completed it. Now I cannot access the survey so as to complete it properly.

Any suggestions?

Hepcat · Post by **Hepcat** » Mon Mar 03, 2003 10:26 pm

Hey Dan.

Re-submits are not permitted to maintain the integrity of the data.

Of course, accidents can happen. I've taken care of your submission.

Delete the cookie as indicated above and you should be able to access the survey again.

Post by **webslave** » Mon Mar 03, 2003 11:49 pm

Hepcat, perhaps we should default the enter key to something other than the submit button to stop this prob recurring?

Post by **webslave** » Mon Apr 21, 2003 1:25 pm

The Survey Database now has a PDF (Acrobat) document summarizing the results of the survey:
http://24.70.71.8/cppssurvey.pdf

Thanks to Derrick for all his hard work on this despite poor health.

Post by **webslave** » Sun Aug 03, 2003 3:49 am

This survey is suspended for analysis of data (we have quite a lot).

UCPPS - Prostatitis, Interstitial Cystitis Forum

UCPPS - Prostatitis, Interstitial Cystitis Forum

Survey Database

Survey Database