Study of COVID-19 outcomes in patients with rare diseases in Germany [SCOPE-RD], part 2

Abstract Background People with rare diseases often require continuous and specialized medical care. The COVID-19 pandemic has strained healthcare systems worldwide, but only limited data is available on its specific impact on patients with rare diseases. The aim of this study was to assess the burden of the pandemic on people with rare diseases in Germany, identify gaps in their healthcare, and provide a foundation for future strategies to support this vulnerable group during pandemics. Methods A retrospective, representative cross-sectional analysis was conducted using statutory health insurance (SHI) claims data from approximately 4.9 million insured individuals between 2017 and 2022. Patients with rare diseases were identified based on specific ICD-10-GM codes. Results The study presents initial results regarding mortality, disease burden, healthcare resource utilization, and healthcare costs associated with patients with rare diseases with and without SARS-CoV-2 infection. A total of 14,912 patients with rare diseases were identified, of whom 2,378 (16%) contracted COVID-19 between 2020 and 2022. Patients with COVID-19 incurred higher healthcare costs, particularly in 2020 and 2021, with average costs nearly twice as high as those without COVID-19. Healthcare resource utilization, including hospitalizations and emergency visits, was higher in the COVID-19 group. Additionally, these patients exhibited increased psychological stress and a higher need for pain medication. Conclusion Within the analyzed cohort, patients with rare diseases who contracted COVID-19 showed higher mortality, disease burden, healthcare resource utilization, and healthcare costs than those who did not. As this descriptive analysis included no external comparator group, the findings characterize the burden of COVID-19 within the population of people with rare diseases, in the context of published data on the general population and people with chronic diseases, rather than establishing an effect specific to rare diseases in general. They nonetheless underline the vulnerability of this group and the need for tailored strategies in future pandemics.