Results from the COVID-19 European Patient Registry

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.