Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) is a very rare lymphoid disease that requires from highly specialized expertise for the proper diagnosis, being very often misdiagnosed and under reported. BPDCN clinical management requires from multidisciplinary team including hematologists and dermatologists as the skin is the most frequently involved site of the diseases. The prognosis of the disease is approximately 1 year if patient is not transplanted, and there is an urgent need for the development of curative treatments.
The availability of BPDCN patients data at the EU national level greatly varies from one country to another, where the only national database gathering patients data has been identified in France.
Considering the lack of existing registries, after a first contact with the curator of the French database, a collaboration has been established to support the creation of a new European registry on BPDCN with three countries acting as pilots: France, Italy and Germany.
EuroBNet is being led by:
Eric Deconinck, CHRU Besançon, France
Thomas Heinicke, Otto-von-Guericke University, Germany
Giovanni Marconi, Istituto Scientifico Romagnolo per lo Studio e la Cura dei Tumori, Italy
The BPDCN specific Common Data Set is under development in line with ENROL dataset and standards for interoperability implemented. A collaboration agreement will be in place for the transfer of a subset of pseudonymysed patients' data to ENROL.
