COVID-19 European Rheumatology Patient Registry

As part of the COVID-19 Global Rheumatology Alliance, a patient registry has been built to better understand how the coronavirus affects people with rheumatic, autoimmune and autoinflammatory diseases. This will help healthcare professionals across the world in treating people with COVID-19, especially those who have a medical condition.

Now we need your help. If you are an adult or child with a rheumatic, autoimmune or autoinflammatory condition, such as rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), systemic lupus erythematosus (SLE), cryopyrin-associated autoinflammatory syndromes (CAPS), Still’s Disease, chronic recurrent multifocal osteomyelitis (CRMO) or any other related condition, please join the registry. It is also open to siblings and family members (regardless of whether they have an underlying health condition) so that we develop a good understanding of how the virus affects people differently.

Visit www.jarproject.org/covid to sign up. You will be asked to fill in a short survey (either for you or your child) to join, and you will then receive short follow-up surveys every week to understand how things have changed.

This project is being coordinated across Europe by the European Network for Children with Arthritis and Autoinflammatory Diseases (ENCA), the Paediatric Rheumatology European Society (PReS) and Juvenile Arthritis Research (JAR), with support from clinicians, researchers and patient support organisations throughout Europe and partners across the world in the COVID-19 Global Rheumatology Alliance.

Written by simonrstones

Simon R. Stones BSc (Hons) is a multi-award winning patient advocate, consultant and researcher from Bolton in the United Kingdom. He was recognised in 2019 as one of the top 100 most influential people with disabilities in the UK, and was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with chronic conditions and invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood, as well as a carer for his mother. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, board member of the European Network for Children with Arthritis (ENCA) and President of the European Network of Fibromyalgia Associations (ENFA).

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