Initiated 2004 as national registry in Germany (PV-ERY-KA 03) by Holger Cario
Web-based International database developed 2005 by ML. Ribeiro and C. Bento,
Hematology Unit, Centro Hospitalar de Coimbra, Portugal
- Prospective registration and data collection of patients with congenital or idiopathic erythrocytosis (priority for patients with defined genetic cause).
- Prospective registration and data collection of patients with polycythemia vera with rare somatic JAK2 mutation (i.e. exclusion of patients with only JAK2 V617F mutation).
- Characterisation of these diseases by clinical examination, hematological, biochemical, and molecular genetic analyses.
- Prospective data collection on clinical course, treatment, complications, and on secondary pathophysiologic changes due to erythrocytosis.
Celeste Bento, Centro Hospitalar e Universitário de Coimbra, Portugal
Holger Cario, University Medical Center Ulm, Germany
Mary Frances McMullin, Belfast City Hospital, Queen's University Belfast, UK
François Girodon, Centre Hospitalier Universitaire de Dijon, France