1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

RESEARCH: GCA & PMR. We need YOU…………….. to be one of 500.

Posted , 21 users are following.

This discussion has been locked due to a period of inactivity.
Emis_Moderator
Emis_Moderator

WE ASKED PATIENTS TO PARTICIPATE IN THIS RESEARCH PROJECT: ‘YOUR EARS’

May 2017 we asked you to take part in the above research:

April 2018, only 155 have taken part in this study and the target is 500.

We need the 500 so we are well short of the target.

Preliminary findings show that there is a connection but we cannot take it forward without your input.

I know that only patients who live in the UK can take part…….so it is down to us and it costs you nothing except your time.

I am appealing to all of you to help yourself and people in the future who will develop GCA and PMR.

Researchers all over the world are looking for cause, cure and better diagnostic procedures.

Will you help or am I asking too much?

RESEARCH: GCA & PMR.

We need YOU………...

The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust is to continue research following the result of the basic survey which we did last year on ‘Your Ears’

In late May we met with Dr Kelly and Susan Pugmire. They advised us that the NHS would now undertake qualitative research. We had donated £1000 start-up costs. All future costs will now be paid by the NHS.

They need at the very least 500 people with GCA , GCA&PMR and PMR. It would be amazing if we could get more patients to participate.

YOU now need to contact the Queen Elizabeth Hospital Research and Development in one of the following ways:

E:mail: Susan.pugmire@nhs.net

Subject heading: Research: GCA&PMR.

Postal Address: Sister Sue Pugmire

Co-Investigator/Research Nurse

Queen Elizabeth Hospital

Rheumatology Unit/Jubilee Hospital

Gateshead

NE9 6SX

Plus your postal address.

Once your initial enquiry has been received research documentation will be sent to you and if via the postal service a prepaid envelope will be supplied for you to return the completed documentation.

Mavis R Smith

Chair

PMR&GCA uk North East Support

Charity Reg No: 1138409.

This study is now complete and published. The results can be seen here: https://healthunlocked.com/pmrgcauk/posts/141578649/your-ears-research-result-8th-cranial-nerve-involvement.

2 likes, 26 replies

26 Replies

Prev
  • shyminx
    shyminx Emis_Moderator

    Posted

    Hi

    Firstly, Pam7653 sadly they only want people in the UK to take part so you won't be able to.

    Secondly.....Emis Moderator, are they still looking for participants do you know? I'll be glad to help with it if they are.

  • veronica81435
    veronica81435 Emis_Moderator

    Posted

    yes im willing to take part in your study . im only 50 and had a battle on my hands with DR listerning to me! still do as was meant to go on a new drug to help . i was in a wheelchair before steroids and after taking them was a massive improvement with no pain or weakness etc. then when dropping the steroids I developed GCA after real bad headaches, eye pain , half loss of vision with sweats would not go but when i had my steroids put up it went over night .. Now a DR in a new area is trying to say i never had PMR with GCA in the first place just because they dont want to give me an expensive drug . because she was looking at old records ofsaying i had fibo . SO yes id like to take part so this sort of ignorants can go.

  • leigh77
    leigh77 Emis_Moderator

    Posted

    Hi, Just seen this post and have emailed already. awaiting a reply. Thanks very much for this.. much more research needs to be done!

  • Lsmu
    Lsmu Emis_Moderator

    Posted

    Hi, i would be happy to help, let me know what you need from me to start

  • shirley40391
    shirley40391 Emis_Moderator

    Posted

    Hi. I have tried applying twice but got no reply. Still willing to take part if you want me!

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.