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
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.
debra90988 Emis_Moderator
Posted
shirley40391 Emis_Moderator
Posted
I am willing to participate. What do i need to do?
shirley40391
Posted
Sorry i have read the initial information and have sen t an email!
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.
wendy64238 Emis_Moderator
Posted
If you ever need someone in New Zealand, I would help
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 Emis_Moderator
Posted
Hi, i would be happy to help, let me know what you need from me to start
shirley40391 Emis_Moderator
Posted
Hi. I have tried applying twice but got no reply. Still willing to take part if you want me!
EileenH shirley40391
Posted
Sorry I hadn't seen these most recent posts. The study has been completed and the results published. I don't know if there is a post on here but this is on another PMRGCA forum:
https://healthunlocked.com/pmrgcauk/posts/141578649/your-ears-research-result-8th-cranial-nerve-involvement.
freda07782 EileenH
Posted
thanks for the link. will comment after i have digested the material. freda