When do patients infected with the new coronavirus develop severe symptoms and when do they develop mild courses of disease? What is the best possible treatment and which measures have been successful up to now? Scientists and doctors urgently need reliable clinical data to enable them to answer these and many other questions about the coronavirus. Consequently, the German Society of Infectious Diseases (DGI) initiated the establishment of a European case registry to collect clinical data of patients with SARS-CoV-2 infection. It is jointly being set up with the DZIF.
"We have opted for this course of action as there has been a repeated call for free anonymized data," explains Prof. Joerg Janne Vehreschild, DZIF scientist at the University Hospital of Cologne. He is coordinating the project, which is being supported by the ESCMID Emerging Infections Task Force. "This registry will also collect clinical data of patients who are no longer capable of giving their informed consent."
The new registry, Lean European Open Survey for SARS-CoV-2 Infected Patients, or LEOSS for short, will make all the data collected available to the scientific community for use in collaborative analyses. LEOSS is multilingual and open for implementation across the entire EU. An additional special feature of this registry is that the study will be self-managed by the participating centres. Multi-layered safety features will warrant strict anonymity, permitting patients who are no longer able to give their informed consent to be included in the registry.
The availability of palpable clinical data of patients in Europe can be pivotal in providing the best care possible for the anticipated high number of cases, including those who are critically ill."
Prof. Joerg Janne Vehreschild, DZIF scientist at the University Hospital of Cologne