RESEARCH: GCA & PMR. We need YOU…………….. to be one of 500.
Posted , 21 users are following.
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
jean39702 Emis_Moderator
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.
freda07782 Emis_Moderator
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
jan_37704 Emis_Moderator
Posted
I would love too but can't. Live in NZ
Royall Emis_Moderator
Posted
freda07782 Royall
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
freda07782 Royall
Posted
It worked!!!! Try sending your email to this address, it worked for me!
Good luck, Freda
Royall freda07782
Posted
Royall freda07782
Posted
Hello. Thank you it worked!!! I have received an email back from Susan 😊
freda07782 Royall
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Great news, It's good we can help in some small way! I expect to receive something soon in the post. Keep well, Freda
freda07782 Royall
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
Royall freda07782
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 😊
Guest Emis_Moderator
Posted
debra90988 Emis_Moderator
Posted
mary19068 Emis_Moderator
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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
pam7653 Emis_Moderator
Posted