Frequently asked questions
The COVID-19 European Patient Registry was launched in March 2020, and by August has over 3,500 adults and over 600 children taking part. In late May 2020, we introduced a 'free text' question, inviting participants to give any other information they would like to in the English language version of the survey. As these responses are analysed anonymously, we are unable to respond to individual comments. However, we have developed this FAQ to answer some of the most common questions.
How can I sign up to the European Patient Registry?
You can sign-up at www.jarproject.org/covid. Once you have submitted the first survey, we will send you short questionnaires each week to fill in. These help us understand how COVID-19 is affecting you over time, whether you get the infection or not. The follow up surveys usually only take a couple of minutes to complete.
The Registry is split into adults and children, and is open to anyone to join whether you have a rheumatic, autoimmune or autoinflammatory condition or not.
Why do you ask for my email address each week?
The reason for asking for your email address each time is because each survey is standalone. That is, when you fill in a questionnaire the data is received by us and we load it into the Registry. Your email address is encoded and used to link to your previous forms (the email address itself is not held in the Registry, keeping it anonymous). Because your personal data is not held on the website, your previous questionnaire responses are not linked to your new response until we download the data.
This is the simplest way for us to be able to link your new responses to your previous ones. There are other, more technically complex, ways to build a patient Registry which would avoid this requirement - unfortunately we had to build our systems in 3 days to start the project quickly and a more complex solution takes several weeks. In terms of security, your data is held securely within the survey system; when we download the information your data is linked and then anonymised. Looking at the Registry, there is no way to identify an individual, and nobody has access to your email address from us.
How can I find the results of the study so far?
All of our publications are available to read for free at www.jarproject.org/covid/results. These can be downloaded and shared as you wish. We share the findings with our medical advisory board and with other clinicians and researchers.
Can you give me any advice about returning to work or school or government guidance?
Unfortunately we are not able to give advice about returning to work or school, and cannot give advice about government guidelines. We advise you look at guidelines published by your public authorities as well as the World Health Organisation (WHO). If you have any concerns, please speak to your doctor or healthcare professional.
I have changed my email address - what should I do?
Each week we will send you an email inviting you to complete the next followup survey. To do this, we need to know your email address, and we need to keep this information up-to-date. If you change your email address during the study, either reply to the survey email one week telling us your old and new email address, or email email@example.com telling us your old and new email address. We will then update our records.
When do you send surveys out?
Each week we will send you an email inviting you to complete the next followup survey. We usually send these on a Monday. In some cases we send a reminder later in the week (often on a Thursday) if you haven't clicked the links through to the survey by then.
How long will the study carry on for?
At the moment, we intend to continue running the European Patient Registry whilst the pandemic continues. This may change if numbers of cases reduce or due to other research factors. By taking part each week, you really are helping us understand COVID-19, and how it affects people with rheumatic, autoimmune and autoinflammatory conditions better.