The European Patient Registry
Partners of the Global Rheumatology Alliance
The COVID-19 (Coronavirus) pandemic has quickly infected hundreds of thousands of people worldwide. While many people with COVID-19 infections have mild or no symptoms, a significant proportion of patients can become quite ill. At this time, little is known about how patients with rheumatic diseases or autoimmune conditions, many of whom use medications and drugs that suppress the immune system, are affected by the virus.
Working with partners across the world, we have launched a European patient registry (although we welcome anyone from around the world to join us). Anyone with a rheumatological, autoimmune or autoinflammatory disease is invited to take part. We will ask you a series of questions now, and send follow-up surveys each week so we can learn how COVID-19 may affect you.
We also welcome people without a diagnosis to take part, including siblings of children, or spouses of adults, so that we can see if people with rheumatological conditions are affected in a different way or not.
Click here to access the survey for parents/carers of children and young people (English language).
For information about the study, click here.
For information about how we will use your data, please click here.
To read our results, click here.
We have published some frequently asked questions here.
The links above are to the survey in English. Other languages are listed below.
Albanian - Survey for adults - Pyetësor per te rritur
Arabic - Survey for children - مسح للأطفال
English: Survey for adults
English: Survey for children
Portuguese: Survey for adults - Adulta/o
Portuguese: Survey for children - Crianças
Slovenian: Survey for adults - Anketa za odrasle
Slovenian: Survey for children - Anketa za otroke
Results so far
This European Patient Registry is partnering with the Global Rheumatology Alliance. It has been developed by patient organisations across Europe, including Juvenile Arthritis Research, ENCA, and PReS, in liaison with PRINTO and the BSR, and working with colleagues from a range of hospitals and research centres. Our questions are similar to those used in other countries, but have been adapted for European patients (using the most appropriate names for medications and conditions, for example). Some patients may also be taking part in similar studies, as they will all be looking at slightly different things and all build on the body of research knowledge helping doctors and researchers to understand COVID-19.