The VASCERN Registry is an essential tool that offers a centralized repository for clinical data and information related to rare vascular diseases. By gathering clinical data, the registry aims to improve research, diagnosis, and care for patients. With standardized data collection and collaboration among healthcare professionals, researchers, and patients, the registry empowers personalized treatment, fosters innovation, and enhances patient care.
The PPL-WG Registry project will consist of the creation of a FAIR registry dedicated to the diseases covered by the PPL-WG, with the same aims, organisation and steps as the VASCA Registry. In addition, the PPL Working Group will benefit from the progress made by the VASCA Working Group, as PPL will use the same server, program, and development strategy as VASCA.
More information on the PPL-WG registry is available on the Registry page here.