The National Registry of Creutzfeldt-Jakob disease and related disorders, established in 1993 at the Istituto Superiore di Sanità in Rome, has two closely linked functions: the surveillance of Creutzfeldt-Jakob disease (CJD) and related disorders and the activity research on Prion diseases.
Surveillance complies with legal obligations by estimating incidence and mortality of Creutzfeldt-Jakob disease (CJD) and related syndromes in Italy. It also aims to identify environmental or genetic risk factors that can contribute to the etiopathogenesis of the disease or modify its course. In particular, risk factors related to surgery, transfusions and possible animal-human transmission are assessed according to the CJD Surveillance Protocol and related syndromes approved by the ISS ethics committee (CE-ISS 09/266).
This activity is carried out in collaboration with the regional reference centers for prion diseases in Italy, the Department of Prevention and Communication of the Ministry of Health, the National Blood Center and local health authorities, providing advice when necessary. The surveillance activity is carried out in close collaboration with the centers that in Europe and around the world deal with the surveillance of prion diseases in humans.
Surveillance is integrated with the research activity on Prion diseases in projects that mainly concern epidemiology, the study of the molecular basis of phenotypic variability, the definition of diagnostic criteria, the development of new diagnostic investigations, the study of new biomarkers of disease, the characterization of human TSE strains, the study of the genetic forms of Prion diseases. This research activity is carried out in collaboration with other groups of researchers in Italy, in Europe and in the world.
These activities are carried out by a group involving medical doctors, biochemists, molecular biologists, statisticians and other people who are responsible for the coordination and functioning of the Registry.
Italian National Registry of Creutzfeldt-Jakob disease and related disorders
Istituto Superiore di Sanità
Viale Regina Elena, 299