I'm reposting this so as to be able to keep it up-to-date for the new people who may not have seen it - it's been up once but I can't find it to point it out to newbies who may be able to contribute. If it's in "my" list, I know where it is.
The original work was posted here:
And right at the end of the thread is what I have now posted here. The pilot study showed a need - and this is the research to fulfil that need. Please join in and contact them. It is for residents in the UK I'm afraid - so this is my contribution:
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: (incorrect email was Susan.email@example.com)
Correct email is firstname.lastname@example.org
Postal Address: Sister Sue Pugmire
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. Please do not put this aside thinking ‘I will do it later’, we need you to do it now – so block and copy and help with this research.
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.
PMR&GCAuk North East Support
Charity Reg No 1138409.
website: pmr-gca-northeast.org.uk/ E:mail email@example.com