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A new study published in Rheumatology shows that people over 35 with rare autoimmune rheumatic diseases such as lupus, vasculitis, scleroderma, myositis and juvenile idiopathic arthritis are at heightened risk of dying during the pandemic.

The RECORDER project (Registration of Complex Rare Diseases Exemplars in Rheumatology) looked at 170,000 health records and found that in March and April, 1.1% of people with these diseases died. This is 1.44 times higher than the average mortality rate for this community during the equivalent months of the last five years, and 0.06 more than the general population of England, whose mortality rate during this period was 1.38 times higher.

Dr Fiona Pearce, study co-author, said: “People with rare diseases often have poorer health outcomes generally, so we wanted to find out what impact the pandemic had. We now know that during the early months of the pandemic, people with these diseases were more likely to die than the general population.”

Fiona now plans to look at death certificate data to determine cause of mortality, as well as the impact of shielding, to help steer clinicians and policy-makers on what healthcare services to focus on, as well as prioritisation for vaccines.

BSR President Dr Sanjeev Patel said: “These results are incredibly important to the rheumatology community. These conditions might be rare, but when we look at them together, it’s a significant number of people.

“This is a large study which shows for the first time that a subgroup of patients in our care are at an increased risk of dying during the pandemic and at a much younger age. We don’t yet know the reasons why, but this study brings into sharp focus the need to be more vigilant with these patients – this should help inform future shielding advice.”

Other main findings include:

  • Women with rare autoimmune rheumatic diseases had a similar risk of death to men during COVID-19 – whereas usually their risk of death is lower

  • The risk of working-age people with rare autoimmune rheumatic diseases dying during COVID-19 was similar to that of someone 20 years older in the general population

Patient Lynn Laidlaw says that while this report is “scary reading”, she sees it as a starting point for the improvement of communication between rheumatology departments and patients to help them better manage their conditions during the pandemic and beyond.

Patient Nicola Whitehill adds: “Since the pandemic, all my medical appointments have either been cancelled or conducted via telemedicine. This research must be the catalyst to find out urgently the reasons why people with these conditions have been so adversely affected.”

Read the full findings

The study is a joint initiative between the University of Nottingham and the National Disease Registration Service at Public Health England.

BSR's guidance and risk stratification remains unchanged given these new developments. As the authors have made clear, this paper shows increased risk of death, but does not show cause of death, further work is needs to be done to determine this.