We have been asked to help with an international project aiming to develop guidelines on the treatment of GCA. The project team is led by Christian Dejaco (Italy/Austria) and Carol Langford (USA) and UK members are Bhaskar Dasgupta, Sarah Mackie and Rashid Luqmani. In addition, our own Lorna Neill is the UK patient representative.”
There is an international task force working on this project. The team is led by Christian Dejaco (Italy/Austria) and Carol Langford (USA) and UK members are Bhaskar Dasgupta, Sarah Mackie and Rashid Luqmani. In addition, our own Lorna Neill is the UK patient representative.
When published, this work is likely to influence both research and treatment of GCA in Europe and the States in future years, so it is vital that as many patients as possible contribute to the thinking that goes into it.
Questionnaires have been produced to gather patients’ experiences of GCA and which of its effects are most important to them. The link to the first questionnaire of three is in the email below (I have added ** to highlight this – it mentions the consent process which is 5 pages before you get to the questions). It is fairly simple to complete with the proviso that it is designed for both patients and medical professionals. As a result there were questions that I couldn’t understand or were not relevant – but you just choose the option of no score for those items.
If you are interested then please do assist this project which, for this first questionnaire, has a deadline of 26 January. I would be pleased to answer any questions you might have, or I can pass them on to a more knowledgeable person.
Email from EULAR is below : Because you are someone with Giant cell arteritis (GCA), we are interested in your experiences and knowledge. This is part of a research project to understand which effects of GCA are important to patients. 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’. ** For more information about the consent process, click on the following link:
https://external.redcap.uhn.ca/surveys/?s=X7MYJLFWMHE8K8CM
Written by Richard Cuthbert (chair@pmrgcascotland.com)