INTERNATIONA SURVEY FOR PMR-GCA PATIENTS | Arthritis Information

 

We have been liaising with Medics and Immunologists in both the UK and the USA.

An on-line survey form has been launched and we would ask you to look at it and fill it in.

This survey is patient driven and patients need power.

The wider the data base the more we get to know about pmr-gca.

It is hoped that this survey will be used by researchers to find cause and cure and it is available world wide free of charge for all to use.

It will only take a few minutes to fill it in.

the link is http://www.quantisurve.com/cgi-bin/pmr.asp

Mrs K Hi All

I notice there have been a few viewings and wondered if anyone had any comments, thoughts or had actually filled the survey in.

We need PMR-GCA Patients to fill in the survey - it will be used by Research people in the Search for cause and cure.

In the UK - our National Insitute of Clinical Excellence is currently scrutinising standard diagnostic procedures which Professor Dasgupta has been working on over the past few year.    The more actual imput from patients - who are the only people who actually know what it is like - the better.

Cause and Cure are very very necessary.   Help us to Help you.


I do not have PMR(I have Ra) but was just being nosie. It looks like a good survey. Lots of

Hi, Mrs UK - yes I filled it out.I completed your survery, and certainly would be interesteed in knowing the results of your survey.  Would you let us know when it is available?  Thanks.Have just completed survey, thank you for putting it forward for us to contribute. Its been a while since diagnosis .. March 06 and from what I'v read there does't seem to be any new, News! Maybe this will help those trying to help us. Thank You...

I have completed the survey. Looking forward to seeing some results.

 

Sheila

Completed the survey last week... Looking forward to results!Update

We reached our first 100 responses and we only launched 1 July.

We still need more.

Will let you all know when results are available.

Thank you to those who responded.

We still need more - take a few minutes - its for your benefit.

We need research urgently and this survey is by patients and for patients as well.  We are the only people who can tell the medical profession what it is really like.

Promise to update you all in the future.


Mrs UK
Completed the survey but had difficulty. Was so hard to remember the Prednisone dosages due to going up and down sooooo much over the past 2 + years. Didn't recall some of the lab results either. Oh well, I did the best I could and hope it helps. Hi all you PMR and GCA Sufferers.   WeE need to help ourselves.

We need you to fill in the Survey.

It only takes a few minutes.

We need to press on and drive forward research into Cause and Cure.

Here is the address again.

http://www.quantisurve.com/cgi-bin/pmr.asp

Reports are available on request, but until we reach at least 200, they will be of little use.

Its up to you all - you are the ones with the power to change and raise the profile of PMR and GCA.

Hi, I am a newbie, and I just filled out the survey. I am a yoga instructor in California, and I must tell you patients to try a yoga class. It makes all the difference in the world, but be sure you have a good teacher, one that knows what they are dealing with. This is not the time for power yoga, it's for hatha yoga, or restorative yoga. I was just diagnosed a month ago. Yikes, this stuff is no fun.  Hello again - well I just wish the 815 people who viewed this topic had taken to time to fill out the survey.

But we finally reached over 200 which made it worthwhile to produce reports.

I promised access would be free to all and that includes, patients, researchers and Uncle Tom Cobley and all.

And, if those of you who have not taken the time to fill it out  - you are most welcome.  the more patients who take part the better the information and statistics.   We need to help ourselves and push for cause and cure.

Here is the link

http://www.quantisurve.com/pmr/Reports.htm

Oh and please let us know what you think of it all.
MrsUK,

I looked at the survey when you first mentioned it way back when and for some reason couldn't get on it. This time I did, and even though I have been free of PMR for over a year now, I filled it out. HOpe it helps. Thank you for gettig the ball rolling on that. Hope it will help all the PMR sufferers, present and future!

Reni
Mrs UK,  I  Congratulated you on another forum but just want to endorse my Thanks for all your hard work in getting us to make the effort to complete the survey. You must be very proud of your self to have achieved such a comprehensive outcome.! This is going to benefit all of us and the medical professional as well. Again 'Thank You'

Hope you get to have a break to enjoy the Holidays . Merry Christmas and may 2009 be happy and healthy for you.

Lyn M and Knitwit

Thank you both for taking the time and effort to fill in and then follow up.

No Lynm I am not proud of myself, I was just so furious when I discovered that the illness my mother had 21 years ago had made no progress when I contracted it.

4 other women felt exactly the same way for different reasons and we got together via the net  - then an American Male came along - a pmr sufferer who knew about microbiology and surveys.   We got together and swapped ideas.

Results

The first international survery ever done and will continue and hopefully get bigger and a brand new Organisation in the UK called PMR-GCA UK which is setting up self-help and support groups throughout the UK (there were three already up and running) and is also planning to aid research into cause and cure and to highlight these to illnesses, which whilst they are not life threatening destroy your quailty of life and moreover are an the rise and are occurring in younger people.

None of this can happen without the support of people with pmr, gca and there families and carers. 

I am  70 and have GCA  Now I know all this won't benefit me - but it will benefit other people, hopefully in the future. 

I will have a good Christmas as friends are coming and I get out in the wheelchair and to shops I don't see so often. Hopefully as the steroids are reduced, I will be able to walk again.   So roll on 2009 and no relapses. 

Stay as well as you possibly can and enjoy life to the full.


Hi,
Very useful and nice article!!
One advantage of using the on-line survey is that his company has developed software for automatic extraction of responses into a database and for the generation of detailed, useful, and easy-to-understand reports from this database.

Tia,
Paid Surveys

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