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Author Topic: Stanford Research on Peyronie's treatment - patient survey  (Read 7498 times)

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arthur3g

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Stanford Research on Peyronie's treatment - patient survey
« on: January 12, 2014, 07:35:14 PM »

Hi! I am conducting a survey to understand Peyronie's patients perspectives to complement my research into new treatments for Peyronie's disease. If you are interested, please fill out the quick survey at the link below.

Thank you!
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Moderator: Please see LWillisjr and emasculated posts above, you may want to act accordingly then we can help your "research"
James
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LWillisjr

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #1 on: January 14, 2014, 05:44:44 PM »

arthur3g,
Please understand I did not find it offensive in any way. It just seems to be targeting current people with Peyronies who are looking for a treatment. I had mine surgically corrected so I wasn't sure how to answer the questions. I could answer from the perspective of when I had Peyronies but don't know if that would skew your results.

Also, not sure where you got the impression that treatments are not covered. There are a few here who unfortunately don't have insurance and so this is why it isn't covered. And there are some cases of men with insurance where insurance covered some costs. Maybe I'm one of the fortunate few where most everything was covered except for deductibles.
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Les - 10 yrs Peyronies Disease free
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LWillisjr

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #2 on: January 20, 2014, 05:15:07 PM »

I have been in contact with the sponsors of the posted survey. After trading several emails I have confirmed this survey is a research project within the University of Standford's Biodesign program. There is no connection to any company. The following is a direct quote regarding the intent of the research. "[Stanford] have identified Peyronie's as an area of medicine that is lacking a sound treatment. As we think about coming up with a new solution in this space, we want to truly understands what Peyronie's patients want".

https://www.surveymonkey.com/s/FZ7G68B

The survey takes less then 10 minutes and you are welcome to take it to provide your input at the following web address. If anyone has any concerns or questions you can send me a personal message.

Les
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Les - 10 yrs Peyronies Disease free
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Skjaldborg

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #3 on: January 20, 2014, 05:42:17 PM »

LWillisjr,

Thanks for the research. Given this information, I think it is a legit survey and will probably be helpful to researchers. I just completed the survey myself.

-Skjald
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emasculated

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #4 on: January 20, 2014, 06:47:46 PM »

I see.. it's actually meant to be something serious.
"[Stanford] have identified Peyronie's as an area of medicine that is lacking a sound treatment."

Yes. No kidding. Before you spoke of "cure", now "treatment". Sounds more reputable?

"As we think about coming up with a new solution in this space, we want to truly understands what Peyronie's patients want".

What the patients want might not correspond to the findings of medical science. I mean the research comes first and is open ended. Exploring what mechanisms underly the disease and how one can intervene pharmacologically and / or surgically. How the new drug is applied depends on the results of the research. I find it curious to ask such dull questions if you want to seriously look into the issue of finding a "cure" no less! It's completely secondary what / how / when patients want to have their "cure" applied and how often. The treatment has to work in a placebo controlled, randomized trial, i.e. have a significantly better curative effect than placebo. Now a CURE would make 100% of people in the non-placebo group well again. Meaning dissolve all their plaque, make their curves (magically?) disappear and lenghten (even more magically, who wouldn't want that??) their penises to restore the previous condition. THAT IS A CURE as opposed to an effective treatment. Anyway don't want to be too negative.. at least someone gives a **** about the condition. Good luck to you!
What we patients want is simple btw: A treatment that has the above mentioned level of evidence backing it up. We want more funding (any funding!) to researchers and more public awareness of the condition and how damaging / life destroying it is. There are interviews with Peyronie's specialists who all acknowledge the high levels of depression among their patients. One even stated outright that one of his patients sadly committed suicide.
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"Without health life is not life; it is only a state of languor and suffering - an image of death."

KAC

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #5 on: January 20, 2014, 10:25:47 PM »

I completed the survey as well.  There are lots of little things about it that make me feel like whoever wrote the survey is unfamiliar with the experience of having this disease and trying to do something about it. The question about what therapy I would be "more" wiling to try doesn't really make sense.  And the questions about a therapy and cost really do feel leading toward some specific therapy to be sold to us later.  There's even a typo in one of the questions--which I have no problems with but it comes across as unprofessional...

Just a little feedback in case the survey folks are reading this.
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james1947

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #6 on: January 21, 2014, 05:36:09 PM »

KAC

I am with you. Completed also the survey, have many answers that are similar for many questions.

James
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Knight

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #7 on: January 21, 2014, 08:23:02 PM »

I took it as well but it honestly doesn't seem very well written or thought out. The answers to the generic questions are obvious in most cases. I don't mean to be disrespectful. I'm glad someone seems interested in studying this condition, but you could spend a few hours in this forum getting an education and come up with a better list of questions to kick off the research.

Just my humble opinion.
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liber

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #8 on: January 22, 2014, 05:29:56 AM »

It didn't take more than a minute or two. Hopefully it helps their research.

Cheers .... Liber
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Old Man

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #9 on: January 22, 2014, 08:52:29 AM »

I started taking the survey and suddenly realized that the questions related to a current case of Peyronies Disease. Since I am not presenting any of the symptoms stated in each section, I did not finish the survey.

If they had a section that allowed for questions relating to persons who had overcome the Peyronies Disease, then I could give the benefit of the many and varied ''therapies'' tried and any resulting outcomes of them.

This is just my 2 cents on the subject.

Old Man
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Chris Overleaf

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #10 on: January 27, 2014, 05:38:45 PM »

I got annoyed with the questions because they didn't even ask about sexual feeling and the psychological impact. I can cope with changing shape etc but losing sensation and the ability to arouse myself when I want to is what makes me feel like my whole sense of a sexuality may be fading away.
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D. KEN

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #11 on: May 10, 2014, 03:03:29 PM »

I copied these comments below from;  Chris Overleaf.
-------------------------------------------------------------------------------------------------------------------------------
I got annoyed with the questions because they didn't even ask about sexual feeling and the psychological impact.
losing sensation and the ability to arouse myself when I want to is what makes me feel like my whole sense of a sexuality may be fading away.
-------------------------------------------------------------------------------------------------------------------------------
I didn't take the survey, however, I read all the comments and these words above are Very Important to me.  The psychological impact is sometimes so overwhelming, I don't know if I want to even see people, or watch T.V. because Sex is such a big part of the world.  The reminders of what I can no longer do is tough to manage.  I fully agree with Chris Overleaf all the way !  I feel like a big part of proper living has been stolen from me by this disease.
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james1947

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #12 on: May 10, 2014, 06:35:45 PM »

KEN

I understand and agree with what you are writing.
What you are doing to fight the disease?

James
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1seeker

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #13 on: January 24, 2018, 10:42:07 AM »

I took the survey but I had the distinct impression that they're looking for profit margins. Why didn't they address the suicidal impulses, or depression that comes with Peyronies? I think no one on their committee has peyronies or understands it's many mental complications to ones manhood!
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swiss

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #14 on: January 24, 2018, 11:18:46 AM »

Lmao you guys are complaining about a survey that is trying to get someone that doesn't have Peyronie's disease to understand Peyronie's disease. Of course some of the questions are going to be generic and maybe to some might feel stupid. Give the guy a break. This might just be his initial questionare.
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Walleye

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Re: Stanford Research on Peyronie's treatment - patient survey
« Reply #15 on: June 26, 2018, 03:08:07 AM »

Quote deleted by moderator! Read the forum rules!

I didn’t take any of the comments as ‘complaints’. More ‘concerns’ and opinions. If this was ‘some guy’s’ questionnaire, it’s understandable. Yet from “University of Standford's Biodesign program“, I expected much more of a refined and professional survey. Not some free survey site, with questions that are obviously irrelevant.
Emasculated said it perfectly, so I won’t echo his points, but University surveys aren’t on free survey sites, written in a way that sounds like ‘some guy’s’ questionnaire, often if ever.
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