RESEARCH PART II

[jinasc]

Research Part II

The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust will now undertake qualitative research following the result of the basic survey which we did last year on ‘Your Ears’. We donated £1000 start-up costs. All future costs will now be paid by the NHS England and NIHR .

They need at the very least 300 people with GCA, 300 with GCA&PMR and 300 with PMR. It would be extremely useful if more patients participate. Increase in numbers make it more viable.

YOU now need to contact the Queen Elizabeth Hospital Research and Development in one of the following ways with your name and address.

Subject heading: Research: GCA&PMR.

E:mail: [e-mail]

Postal Address: Sister Sue Pugmire

Co-Investigator/Research Nurse

Queen Elizabeth Hospital

Rheumatology Unit/Jubilee Hospital

Gateshead NE9 6SX

Once your initial enquiry has been received research documentation will be sent to you via the internet or post. The postal reply will include a prepaid envelope for you to return the completed documentation.

The first part of a long journey showed that further research was essential and whilst we will be kept in the loop the hard work will now be done by our NHS. This sort of research is not undertaken by Pharmaceutical Companies. Without the NHS this research would not be undertaken.

The NHS works in a quiet sort of way and the important contribution it makes to research and development is often overlooked or not just known.

A more detailed explanation can be found in the Summer Issue of ‘You are Not Alone’ which is on the website click ‘All Newsletters’ on Home Page. Now it has been handed over this is the final part that PMR&GCAuk North East Support have to play. We will be given progress reports. If you have questions you can send us an email.

Mavis Smith

Chair

PMR&GCAuk North East Support

Charity Reg No 1138409.

website: pmr-gca-northeast.org.uk E:mail [e-mail]

PS: I also posted this as a continuation on the thread headed Research Your Ears if you want to read the back story.

[bunnymom]

Is this a questionnaire only? May people in the States participate?

[jinasc in reply to bunnymom]

bunnymom

This research is for UK resident patients only.I apologise for that omission in the above post. The original post (on this site) had different critieria as it was a basic questionnaire.

That basic questionnaire was designed to confirm anecdotal stories and to see if those could be confirmed.

The result was, this needed to be progressed further and it now needed the professionals to take over. 7 months of discussion took place and the outcome is as that Research and Development will take control. All R&D is undertaken under strict protocols and codes of practice.

The last thing we have undertaken to do is to help with publicity.

You might like to follow this link and read a detailed longer explanation.

pmr-gca-northeast.org.uk/as...

If, by any remote chance, there is any change in the criteria we will alert everyone.

Thank you for your interest.

PS There are many more articles of interest if you follow that link. Fun included.

[trish29]

Thank you Sambucca for all this information.. We have been in touch in the past and l hope you are managing to improve .Best wishes trish29

[jinasc]

trish29

I am doing fine, good days, bad day and 'jewel' days. 5 years GCA coming up to end of 6th in remission. As we only get one shot at life (as far as I know) there is no rehearsal, so I make the most of it, Life is a roller-coaster so enjoy it best as you can.

Best wishes is lovely and wished for you with good health coming along as quick as possible.

On another forum, we all have sayings that automatically appear when you hit the 'post'

this is mine:

"It's Not What You Gather, But What You Scatter That Tells What Kind of Life You Have Lived, Let's scatter a little good".

PMRpro has a lovely one which I envy and one day it just might be posted on the end of a message on here.

[Patience_1]

Thanks for posting, it really is good news - the more concrete information is collected and disseminated the better! Will certainly sign up.

[Janann25]

As a relative newcomer, I am really pleased to hear of this new research. I'm just about to email as suggested by you and will look forward to taking part. Thank you so much for informing us of this.

Best wishes

Jan