INTERNATIONAL REGISTRY OF COVID-19 IN PEOPLE WITH RARE DISEASES

People with a rare disease are vulnerable, but this vulnerability is currently being exacerbated by the global COVID-19 pandemic. Sant Joan de Déu Barcelona Children’s Hospital, together with the Sant Joan de Déu Foundation and Garrahan Hospital and Garrahan Foundation in Buenos Aires, are coordinating a study that analyzes how COVID-19 affects people with rare diseases, including those who are still undiagnosed.

The objective of this initiative, which was presented last June, is to create a clinical registry of patients with a rare disease who have tested positive for COVID-19. The data in this registry will be of great help to those professionals working in the care and treatment of these patients.

This survey will support healthcare professionals in reporting the symptoms of their patients, as well as some data on the infection, the underlying disease of these patients and the treatment they were receiving before and during the infection.