Vasculitis UK
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You are invited to participate in an important study about the effects of glucocorticoids (steroids).

You are invited to participate in an important online study about the effects of glucocorticoids (also known as steroids) and which of these effects are most important to you. This research is being led by the Glucocorticoid Impact Special Interest Group of Outcome Measures in Rheumatology (OMERACT) omeract.org .This group, which has active patient research partner involvement, is developing a patient-reported outcome (PRO) measure to assess the positive and negative impact of glucocorticoids. We really need your help in making sure the measure addresses the concerns and experiences of patients living with any rheumatic disease.

We value your participation, which is completely voluntary. If you agree to participate, you will be asked to take a survey lasting 10-20 minutes.

To qualify for the research, you must be an adult, age 19 or over, and be currently taking OR have previously taken tablet glucocorticoids (for example, prednisolone or methylprednisolone).

Please click on the link below to participate.

CLICK HERE TO PARTICIPATE ctrc.liv.ac.uk/DelphiManage...

For questions about this study, please contact Jonathan Cheah at cheahj@hss.edu.

Thanks for considering participating in this important research,

Susan Goodman, MD, Catherine Hill, MBBS, MD, MSc, Sarah Mackie, PhD, Jonathan Cheah, MBBS

On behalf of the OMERACT Glucocorticoid Impact Special Interest Group

13 Replies
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I have just completed this 😊 you have to register first then complete the survey... it takes about 10/15 mins.. if you accidentally log out you will be sent an ID code by email to log back in.

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Registered and Completed.

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Can people from the U.S. be part of it?

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I believe when you register it asks what country you live in?

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Done, i hope everyone takes the time to fill it in. X

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Important information - just completed and very straightforward, Would encourage as many people as possible to complete

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All done

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Thank you John, I have just completed the Survey. Not all the questions seemed, that relevant to me (Menstrual Problems, for example). There was room, at the end, for further comments. Overall quite a good survey, and certainly, better than some I've answered. I'll be interested to see Part 2.

Love to Susan please.

AndrewT

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Steroids have been used for years in critical medical situations and I believe the positive and negative effects are well documented. What's the aim of this survey?

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There is an ongoing European study; replacing steroids with a drug called Avocapan. They still need to increase the test sample and see if there are any side effects. The new clinical trial is 300 patients and will report back in 2019. This survey is a Patient Reported Outcome tool which has been developed in Bristol; which may help for a better outcome and understanding for patients. These medical trials are so important but so is the patients experience.

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Thanks for your response, John. I have GPA too. I know about the Avocapan trial, and I'd love to see a drug that can replace Prednisone without its side effects. Not sure if the survey will reveal anything new, but I guess it will show which of the side effects are of most concern to patients, so I completed it.

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John,

I have just completed it.

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Done. Cc 🤗

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