National Paediatric Rheumatology Database

The NPRD started 19973 and is now being conducted at >60 different paediatric rheumatology sites throughout Germany. Yearly, about 15 000 children and adolescents with different RMD, most commonly with juvenile idiopathic arthritis (JIA), and with connective tissue diseases (eg, juvenile systemic lupus erythematosus, juvenile dermatomyositis (jDM)), vasculitis or autoinflammatory diseases are recorded in the NPRD in a standardised format by disease-specific questionnaires.

The SARS-CoV-2 module of the NPRD was set up on recommendation of the Society for Paediatric Rheumatology (GKJR) in Germany to provide reliable and representative epidemiological data on the frequency, course and outcome of SARS-CoV-2 infection in paediatric patients with RMD. This SARS-CoV-2 module is embedded as a cross-sectional study in the established prospective NPRD and collects information from patients with RMD and all SARS-CoV-2 infection courses (also including asymptomatic SARS-CoV-2 infection), by means of a specific paper-based questionnaire.

The following items were recorded: demographic parameter, information on SARS-CoV-2 testing (method, reason), symptoms and clinical course of SARS-CoV-2 infection, outcome of COVID-19, treatment of the SARS-CoV-2 infection as well as of the underlying disease. In addition, disease activity of the rheumatic disease (21-item numeric rating scale (NRS 0–10, 0: best)) was recorded before and after SARS-CoV-2 infection.

This questionnaire had been previously aligned with those of the EULAR COVID-19 Registry4 and the COVID-19 Global Rheumatology Alliance Registry.5 The introduction of the SARS-CoV-2 module into the NPRD was communicated to all members via email through the GKJR on 16 April 2020, and reporting of appropriate patients was also encouraged through this channel.