Cambridge University rheumatology survey, particularly keen to hear from people with PMR

[Fran_Benson]

University of Cambridge is running a rheumatology patient survey which some of you may have already responded to, but if you haven't, you may like to participate.

They've had quite a few responses from people with PMR and if they get at least 8 more, they will be able to analyse PMR as a separate disease group for any differences/specific problems to raise with the clinicians which would be really helpful.

It is a chance to raise awareness about the areas most important to you and where more support may be needed, but it is entirely up to you whether to take part.

This survey asks about your medical relationships, disease symptoms and mental health. It should take around 20-40 minutes to complete (you can pause or stop at any time).

Please click on this link to complete the survey: bit.ly/inspire_patients

There is also an information sheet if you click through to the link.

If you have any questions, please contact the lead researcher (Melanie) on: [e-mail]

The survey is open to anyone regardless of location and is likely to be available till the end of this month and for a time in August dependent on how many responses they get but if you do wish to participate, it might be best to complete it in July.

Fran

Updated to say that if you have GCA, please do consider answering too. The push for PMR is because it's so close to creating a separate group to be analysed but all answers will be helpful and if enough people (50+) with GCA answer it would also be treated as a separate group.

[jinasc]

All the PMR people on this forum need to respond to this - patient power works.

[Fran_Benson Partner in reply to jinasc]

Thank you jinasc I've just updated my post so it's clear that people with GCA can answer too. The reason for pushing for PMR is because it's so close to becoming it's own separate disease group for analysis.

[jinasc in reply to Fran_Benson]

I did wonder but did not want to muddy the waters................thanks Fran.

[Bcol]

I was good, responded earlier 🙂🙂

[Lookingforideas]

Ok, just done it 😁👍

[Longtimer]

Have just done it....

[ubaoz]

Done!

[Rostom]

Completed the survey earlier in the week.

It's good to know that by answering a few questions we are helping to extend the knowledge base about PMR/GCA.

Everyone should help!

[Bubble56]

Done!👍

[tangocharlie]

Done but I don't recall being asked if I had PMR specifically. It's a useful reporting tool s it is mainly about the mental health aspects of the disease which is usually overlooked, doctors concentrate on controlling physical symptoms and if you mention mind things or other side effects of Pred you are just told along the lines of 'that's why we need to get you off steroids' but that isn't possible for years at least

[Pixix]

Completed.

[catdance]

Done!

[Elispeth]

I have responded and have since had a reply from James to ask if I would consider sending the survey onto my friends who do not suffer with any autoimmune conditions. I have now done this also. Every little helps 😃!