Patient data was used to understand how people with rare autoimmune diseases have been affected by the COVID-19 pandemic

What is the RECORDER project?

In November 2019, The Registration of Complex Rare Diseases – Exemplars in Rheumatology (RECORDER) project was set up. The project has two main aims:

  • To find new ways to collect data about people with rare autoimmune diseases.
  • To find out how to use this data to improve understanding of rare diseases and the care patients receive.

The project is led by the University of Nottingham, Nottingham University Hospitals NHS Trust and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). NCARDRS sits within the National Disease Registration Service (NDRS), which is part of Public Health England.

What did they find?

At the start of the COVID-19 pandemic, the RECORDER team wanted to see how people with rare autoimmune diseases were affected. After months of work, the Rheumatology journal published their findings in December 2020.

The study showed that people with rare autoimmune diseases were at a greater risk of dying compared to the general population. In March 2020, the team found that around 170,000 people in England lived with a rare autoimmune disease. 1 in 100 (1.1%) of those people died during March and April 2020, which were the first two months of the pandemic. This statistic was compared to:

  • The death rate for people with rare autoimmune diseases in March and April in the five years before the pandemic.
  • Deaths in the general population.

The study found that the risk of dying was higher for people with rare autoimmune diseases compared to previous years and compared to the general population. The risk of dying was similar for men and women and rose from the age of 35. This was different for the general population, where women were less likely to die of COVID-19 than men of the same age and the risk of dying rose from the age of 55.

Why was this work needed?

Most of the information about COVID-19 has not mentioned people with rare diseases. As far as the RECORDER team are aware, this is the first study on the impact of the pandemic for people with rare disease to use the population of a whole country.

The team hope that this study will be helpful for those with rare autoimmune diseases. It allows patients and their families to make informed personal choices during the pandemic.

The results have also been shared to support policymaking around shielding and vaccinations.

What type of data was used for this work?

NCARDRS has legal permission to collect patient-level data and to use it to protect the health of the population. This permission is granted under Section 251 of the NHS Act 2006. Everyone working with patient data has been trained in information governance and follows strict rules to make sure patient information stays safe.

As this is a joint project with NCARDRS, the RECORDER team can use national, routinely collected healthcare datasets. The team used two datasets to measure the impact of the COVID-19 pandemic for people with rare autoimmune diseases:

  • Hospital Episode Statistics.
  • The NHS Personal Demographics Service.

Hospital Episode Statistics record when a patient attends a hospital and what treatment they received. The NHS Personal Demographics Service includes NHS patient details such as name, address, date of birth, NHS number and date of death if the person has died. However, this study did not use names and addresses.

To compare their findings with the general population, the team also used publicly available data from the Office for National Statistics.

How have people with rare autoimmune diseases been involved?

The project’s aims are supported by the Rare Autoimmune Rheumatic Disease Alliance of patient charities (RAIRDA). The results have been discussed with the RAIRDA board who have shared these with members via their social media networks through newsletter articles.

The RECORDER team have spoken directly to four patients to understand what the results mean to them, and what the most important questions are to ask next. The team know that these are difficult results for people with rare autoimmune diseases to hear, but the overwhelming support has shown how vital this work is.

NDRS are also working with ‘use MY data’ for all data stories going forward. ‘use MY data’ is an independent patient movement focused on promoting the benefits of using patient data to save lives and improve outcomes. We are inviting a patient member of ‘use MY data’ to comment on each data story.

After reading this data story, David Snelson from ‘use MY data’ commented that:

‘This research is very important for people with a rare disease. When someone is diagnosed with a rare disease, they are often shocked and worried. Research like this helps clinicians to provide the right treatment and to advise the patient on how to manage their condition. Often people with a rare disease join a patient support group and research like this can also help the group to advise its members.’

‘This study shows what can be done when trusted organisations use our health data. When data from a whole population is used and different parts of our health data are linked together, we get a better picture of the most important issues.’

David Snelson, ‘use MY data’

What are the next steps?

The RECORDER team are now exploring whether people with rare autoimmune diseases are infected with COVID-19 more than the general population. They are also looking into what happens once people with rare autoimmune diseases have tested positive with COVID-19.

The team are continuing to share the results from this research to support policy around shielding and vaccinations.

Where can I go for more information?

You can read the published article here: Risk of death among people with rare autoimmune diseases compared with the general population in England during the COVID-19 pandemic

Listen to this 7-minute podcast about the study by the author Dr Fiona Pearce, published on 29th January 2021

Find out more about use MY data

This work uses data provided by patients and collected by the NHS as part of their care and support.