Results from the COVID-19 European Patient Registry
A patient-powered registry of adults with rheumatic diseases, and parents of children with rheumatic diseases, in the setting of the COVID-19 pandemic.
The European Patient Registry in numbers
The COVID-19 European Patient Registry was launched on 24 March 2020, less than two weeks after the World Health Organisation (WHO) declared a pandemic. Our final weekly follow-up survey was sent to participants on 28 December 2020. We have currently stopped collecting data for now, although may resume if circumstances change.
The infographic shown to the right gives a summary of this study. We would like to thank all 4,336 participants for joining the study and completing weekly follow-up surveys, and providing us with 12.4 million data points over 41 weeks, responding to 219,427 emails.
The study has helped us understand how COVID-19 has affected people with rheumatic, autoimmune and autoinflammatory conditions. We are continuing to analyse the wealth of data we have, and will share more results here.
[Published 6 January 2020]
The survey
Whilst the survey has now closed, we recognise that it is helpful to have access to the questionnaires.
We have therefore created a copy of the survey questions, which you can view here.
Results and findings
Weekly summary of participants
As of 3 January 2020, there were 3,688 adults and 648 children included in the COVID-19 European Patient Registry. Of these, 106 adults (2.9%) and 19 children (2.9%) have been diagnosed with COVID-19 infection.
Click here to see a summary of participants included in the European Patient Registry (PDF). Infographic is shown to the right, and can be downloaded here. Updated 6 January 2020.
Detailed analysis
The number of people in the Registry with COVID-19 is small and all cases so far have been relatively mild, but we will continue to analyse the responses over time to help identify risk factors for getting coronavirus infection and for how severely people are affected. We are also analysing data from the surveys looking at other factors, and our findings will be added below:
Worry about Coronavirus
Patients and parents express high levels of worry about coronavirus affecting them, but not everyone is equally worried about the virus. Levels of worry are reducing. Click here to read a PDF of our full findings.
[29 April 2020]Stopping medication
Patients with rheumatic conditions are stopping medication but not always consulting with their healthcare professionals. If you have any concerns about side-effects, or if you are worried about immunosuppression or the effects of medication, contact your healthcare team. If you have not been able to access your usual medication, or are unable to take your replacement medications, please make sure you speak with your healthcare team or pharmacist for advice. Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[7 May 2020]
Symptoms of COVID-19 infection
Within the European Patient Register, there are (as of 21 June 2020, when this analysis was conducted) 46 adults and 6 children who developed COVID-19. This analysis looks at the symptoms they reported most often prior to their diagnosis. Because people with rheumatic, autoimmune and autoinflammatory conditions sometimes experience some of these symptoms even without COVID-19, it is important to recognise any new or different symptoms. Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[30 June 2020]
Participants with rheumatic, autoimmune and autoinflammatory conditions report a cycle of negative interactions associated with COVID-19 lockdown and shielding.
Participants in the European Patient Register are invited to complete surveys each week. Since the week of 18 May 2020 respondents to the English-language survey have been invited to add additional comments. Some interesting and valuable themes have emerged in the six weeks of free-text comments.
Some respondents reported how they felt their health was affected by the circumstances they are now in, and we have mapped these interactions to create an overall cycle of negative interactions (shown to the right).
Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[8 July 2020]
Demographic and descriptive analysis of participants, and comparison with those diagnosed with COVID-19 .
This analysis provides a summary of all participants in the European Patient Registry up to 8 July 2020, including a comparison of those diagnosed with COVID-19. To date, the EPR has been running for 15 weeks. In that time, just 50 adults (1.4%) and 6 children (1.0%) have been diagnosed with COVID-19. All outcomes to date have been favourable.
Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[15July 2020]
How people protect themselves from COVID-19 has changed over time.
People with rheumatic, autoimmune and autoinflammatory conditions are changing their behaviours and how they protect themselves from COVID-19 over time. Fewer participants are now self-isolating, and more are using social distancing.
In addition, there is a small but growing minority of participants who are not using any of these methods to protect themselves from COVID-19 (around 2% of adults, and 11% of children). The overall level of worry is associated with changing behaviours, with levels of worry reducing over the past 15 weeks of follow-ups.
Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[22July 2020]
The use of face masks and face coverings.
The level of worry that participants are experiencing affects their behaviours in terms of wearing facemasks and face coverings. Prior to the requirement to wear facemasks in shops in the UK, around 7% of adults and 12% of children did not wear a facemask in the previous week at all. However, a much larger proportion of participants have either not left their home at all in the past week, or have only been outside and not to shops or crowded places.
Wearing facemasks can help prevent the spread of coronavirus infection. Many countries recommend or require the use of facemasks in certain situations.
Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[29July 2020]
[29 July 2020]
The use of face masks and face coverings - followup analysis.
The level of worry that participants are experiencing continues to affect their behaviours in terms of wearing facemasks and face coverings. The proportion of participants not wearing a facemask at all in the previous week has reduced. Whilst the number of adults who have not left their home at all in the past week has fallen, the number of children has increased.
Wearing facemasks can help prevent the spread of coronavirus infection. Many countries recommend or require the use of facemasks in certain situations.
Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[12 August 2020]
[12 August 2020]
Key themes emerging from free-text comments.
Many patients are reporting anxiety, exacerbated by the lack of clear guidance, re-opening of schools and workplaces, and being unable to access health services. The impact of long-COVID has affected a number of people within the Registry, and the behaviour of other people has increased anxiety levels amongst participants in the Registry.
We recommend that patients and parents continue to consider a risk-based approach in their activities to try to minimise their personal exposure to the virus as far as possible, whilst taking into account government and medical advice as it applies to you.
Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[19 August 2020]
[19 August 2020]
Key themes emerging from free-text comments - October 2020
Many patients continue to report anxiety, exacerbated by the lack of clear guidance, re-opening of schools and workplaces, and the behaviour of others. Access to healthcare has improved for some, either in-person or via telemedicine, yet some participants are still unable to access essential health services.
We recommend that patients and parents continue to consider a risk-based approach in their activities to try to minimise their personal exposure to the virus as far as possible, whilst taking into account government and medical advice as it applies to you.
Click here to read a PDF of our full findings. A copy of the infographic summary can be found here.
[4 November 2020]
[4 November 2020]
About the European Patient Registry
The COVID-19 (Coronavirus) pandemic has quickly infected hundreds of thousands of people worldwide. While many people with COVID-19 infection 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.
The COVID-19 European Patient Registry has been developed to enable researchers to understand how COVID-19 coronavirus infection may affect different patient groups differently, and whether the medications used by people with rheumatic, autoimmune or autoinflammatory conditions may play a role in viral disease progression.
The Registry is in two parts – one for adults, and the other for children (to be completed by their parent or carer). Participants can join by visiting www.jarproject.org/covid and filling in a simple survey. Every week, a short follow-up survey is sent out to enable researchers to track changes, enabling them to understand whether having these conditions makes a difference to COVID-19 infection or not.
The Registry was launched on 24 March 2020 in English, and in several languages from 6 April 2020. Individuals can join the Registry at any time, on a rolling basis. Each week, data from the initial and follow-up surveys is downloaded, anonymised and combined to generate the longitudinal registry.
How can I take part?
The COVID-19 European Patient Registry is not currently recruiting new participants. Visit www.jarproject.org/covid for more information.
Thank you!
We would like to thank everyone who is taking part in the Registry and completing surveys each week. You are making it possible to find out how COVID-19 affects people with rheumatic, autoimmune and autoinflammatory conditions.
Thank you to the many volunteers who have translated the survey into multiple languages, making it accessible for people across Europe.
Thank you, too, to the dedicated team of volunteers who have helped with the design, set-up and analysis of the Registry, without whom this project could not have happened.
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.