The European Network for Innovative Diagnosis and Treatment of Chronic Neutropenias (EuNet-INNOCHRON) has released a medical database known as the EuNet-INNOCHRON COVID-19 Registry.
The Registry contains anonymized clinical data such as aspects of the diagnosis, laboratory findings, treatment, complications and outcome of SARS-CoV-2 infected chronic neutropenia (CNP) patients and applies the General Data Protection Regulation (Regulation (EU) 2016/679).
Why is Patient Data collected?
The EuNet-INNOCHRON COVID-19 Registry collects data for the better understanding of the frequency and severity of SARS-COV-2 infection in patients with CNP in order to improve patients’ care and treatment. The importance for “coupling information from registries” in order to obtain “new knowledge of great value” has been explicitly recognized in the European legislation (consideration 157 GDPR).
It is the responsibility of the participants to get the permission from their Institutions and we confirm that patients data are protected according to the GDPR. In view of a potential publication, we suggest that all participants who contribute will be included in the Authors.
For more information please contact coordinator[at]eunet-innochron.eu