Research into GCA and its effects on patients: The EULAR/ACR Response Criteria for GCA

[Fran_Benson]

Hi everyone, there is an international team (including Dr Sarah Mackie, Prof Bhaskar Dasgupta to name just two) working on a project looking at patients’ experiences of GCA and which of its effects are most important to them.

This work when published is likely to influence both research and treatment of GCA in Europe and the States in future years so the more patients who can contribute to the thinking that goes into it, the better.

If you have GCA and would like to take part please keep reading.

Criteria for participation

Participation is open to patients with GCA in Europe (including UK) and America. UPDATED: participants can also be from Canada, Australia, New Zealand etc

What's involved?

Here are the details from the study team:

Participation in this study involves completing an online survey, lasting three rounds over the next six months. Although you are asked to enter your name and e-mail address at the beginning of the survey (so we can keep track of who answers the survey), all your answers are completely confidential and we will not match your responses to your name. Each round should take no longer than 15-20 minutes to complete. Participation in this study is voluntary, and you may stop your participation at any time.

We ask you to return each ‘round’ of the survey within 1-2 weeks of receipt. This is so that we can incorporate your answers into the next ‘round’ and to include you in the next ‘round’.

To take part in the study, you must read the following document and give your consent. Then if you're happy to proceed there is a link to the survey at the end of the consent process.

external.redcap.uhn.ca/surv...

Further information

If you would like further information or if you have any questions about participation, please contact Dr. Zahi Touma at 416-603-5800 ext. 5248 or the Research Coordinator at 416-603-5800 ext. 3559 or [e-mail].

[Temoral]

This sounds very interesting Fran. Do we count as Europe still in the UK ?

[Fran_Benson Partner in reply to Temoral]

Yes!

[PMRpro Ambassador in reply to Temoral]

We left the EU, not Europe as a region ...

[winfong in reply to Temoral]

US is out?

[Lmnpmr in reply to winfong]

No. Not at all. US is very much in.

[SnazzyD]

Does one have to be receiving treatment or is it ok to be in remission?

Also the consent form says, “up to 200 people” worldwide.

[liz6620 in reply to SnazzyD]

I have read through the consent form and have tried 3 times now to progress to the survey, but without success. Nothing happens when I select either of the link methods shown. Perhaps they've got the 200 already?

[Fran_Benson Partner in reply to liz6620]

Hi Liz6620, I don't think they've reached 200 yet as we only posted it yesterday. Perhaps try again or on a different device if you'd like to take part.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Was going to be my question..and 200 doesn’t sound many, but I guess more would be unmanageable…

.. and is it first come, first served, or are the ‘difficult “ones going to be filtered out!

[Fran_Benson Partner in reply to DorsetLady]

I don't know. I'll see if the patient representative involved with the study can pop onto the thread as she will have more info than I do.

[DorsetLady PMRGCAuk volunteer in reply to Fran_Benson]

Thanks Fran...

[Lmnpmr in reply to DorsetLady]

Even worldwide it can be difficult to get 200 responses from patients with, or with experience of, GCA. The more the merrier!

[DorsetLady PMRGCAuk volunteer in reply to Lmnpmr]

When I registered I am being advised I have already completed survey.

I did complete the Delphi Study - OMERACT Glucocorticoid Impact Delphi in July 2019 - under reference - "Towards a Core Domain Set for Glucocorticoid Impact in Inflammatory Rheumatic Diseases : The OMERACT 2018 Glucocorticoid Impact Working Group".

So is this direct follow on from that?

[Lmnpmr in reply to DorsetLady]

Hi DL

This is not an OMERACT project but is for EULAR/ACR who bring together international groups considered expert in the field to amass and consider current knowledge then produce recommendations or guidelines for the area of rheumatology being updated.

There is of course much overlap in those involved, though the purpose of the two organisations is different. OMERACT is working to produce common outcomes to be measured when assessing rheumatological conditions along with standardised ways of measuring them, so that researchers around the world can all ‘sing from the same hymn sheet’ so to speak and are able to combine results from patient groups. (Very important when dealing with small numbers in each country e.g. for GCA.)

If you use the link to access the survey it should not bring up anything to do with OMERACT. Mine didn’t. Sorry I can’t help further but the IT area is a closed book (phone,tablet, laptop?) to me.

[DorsetLady PMRGCAuk volunteer in reply to Lmnpmr]

Okay thanks -I’ll give it another go… and see if I can complete,,,

No go, still says I have completed survey, so will give in gracefully and leave it to others.

[Lmnpmr in reply to SnazzyD]

OK to be in remission

[Lmnpmr in reply to SnazzyD]

Active GCA or in remission - we want to know your experiences.

[PMR2011]

Thanks, I was able to sign up. I had to go to “next page” to agree to conditions and submit.

Appreciate the opportunity!

[Bluey-1 in reply to PMR2011]

I signed up similarly, no problem

[Gangley in reply to Bluey-1]

Hello Bluey when I tried to say "yes" I couldn't and couldn't seem to copy the Link (I have more than GCA - also computer illiterate) Help please.

[Bluey-1 in reply to Gangley]

If you keep clicking on ‘next page’ at the bottom and follow instructions to agree consent it’ll take you to the survey. Good luck

[Gangley in reply to Bluey-1]

Thank you I finally figured it out and survey completed.

[Dochaz]

Done!

[winfong]

My signing links on the consent form were dead - the "click here" one and the "click here if that didn't work" one as well

[Gangley in reply to winfong]

Hello Winfong - just go to the next page and you can sign there. I had the same problem but eventually it worked.

[Rugger]

Done!

[liz6620]

Hello FranAs you suggested, I tried a different device and as others here have said I selected "next" more times than I had previously and I've been able to complete the survey.

I'm pleased to have been given the opportunity.

[Fran_Benson Partner in reply to liz6620]

Very glad it worked this time.