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Update on the Your Ears project!! We need your help if you live in the UK.

Posted , 11 users are following.

EileenH
EileenH

We need YOU…………….. to be one of 500.

RESEARCH PROJECT: ‘YOUR EARS’

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

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

we are 345 short of the target.

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

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

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

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

Will you help or am I asking too much?

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 2017 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.

1 like, 20 replies

20 Replies

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  • freda07782
    freda07782 EileenH

    Posted

    Hello Eileen, this sounds like a great research idea. I have sent a text to Susan asking her if I can be of any assistance. I think there is something in this idea of ears. Last summer twice I had inner ear problems. The first I was diagnosed with Benign Vertigo

    ?? (Sorry can't remember the last two letters). Then six months later Labryntitus, this was awful, I couldn't walk in a straight line and was extremely nauseous. Luckily it only lasted a few days and hasn't been back. But it came the day before I was to travel to Southampton for a two week cruise. Needless to say all was canceled but my travel insurance covered me. However, it certainly shakes your confidence!

    thanks for alerting us of this vital research! Freda 

  • freda07782
    freda07782 EileenH

    Posted

    Yes, that's correct. I didn't want to look it up while in the middle of writing your message for fear all would disappear!!! Thanks again. Freda 

  • margaret89358
    margaret89358 EileenH

    Posted

    Eileen I would be happy to take part, would I have to go to Gateshead? 
    • EileenH
      EileenH margaret89358

      Posted

      No - it is just a questionnaire to fill in. They send it by email or post and you can return it by email or post, whichever you like.
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