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

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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.

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  • Posted

    Too bad only those in the UK can participate. I'd be there in a flash. I seem to recall doing an online survey on the topic a while back.

    Good luck getting the numbers you need...we all need.

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  • Posted

    I emailed Susan last week but have not heard anything so far. I'm not sure if she got my message. Should I re send my original email?  I would very much like to participate. 

    Please advise. Thanks. freda 

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  • Posted

    Hello. I emailed Susan last week and had a email back saying that my email hadn’t been delivered . Its a shame as I would like to take part . Jennyrose 
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    • Posted

      Hi, I emailed Sue last week and just got a reply so I'll try and copy her email from her message and try to paste it on to you. 

      Not sure if this will work but let's see! Freda 

       

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    • Posted

      Great news, It's good we can help in some small way! I expect to receive something soon in the post. Keep well, Freda

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    • Posted

      Hi Jenny did you receive any forms or notices from Susan? I haven't heard a word since sending my message. Maybe they have enough folks already! 

      Freda 

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    • Posted

      Hello Freda, Yes thank you I received the forms via an email which I printed , filled in and have now sent them to Susan, I haven’t heard anything since. Did Susan email you the forms ? Hope so 😊

       

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  • Posted

    Hi

    I have a query.

    Each time i want to reply to a post..this comes up after i've signed in..'Error has Occurred' i d9n't know why an error has occurred please can you help..kind regads..mary19068...thank you

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