International projects
Paraneoplastic Neurological Syndromes (PNS) strengthening the European network
Organisations (1)
Abstract
Paraneoplastic neurological syndromes (PNS) are severe disorders of the nervous system that arise as remote effects of neoplasia. Diagnosis of PNS is currently aided by detection, in patients' serum and cerebrospinal fluid, of specific autoantibodies that recognize antigens shared by the tumour and nervous system cells. In most cases, correct diagnosis of PNS permits early detection of the tumour, before it can metastasize. The rarity of PNS prompt the need for multicentric studies to collect sufficient numbers of patients on which to base specific studies. With the support of an EC grant (QLG1-CT-2002-01756), a Network of reference centres located in over 10 European nations was established for these pathologies (see www.pnseuronet.org). During the first 2 years of the scheduled 3 years' activity, a DATABASE has been developed and validated for the standardized collection of information on PNS patients dating from 2000, and a central bank set up to store biological material.This Network has defined and published guidelines for the first time on PNS diagnosis, which will facilitate clinical diagnosis of the diseases and the collection of uniform groups of patients for specific studies. Over 500 cases have now been collected in the database which, considering the rarity of the diseases, is a very significant number, unmatched in the international literature. The aim of the project is to a) be able to continue, for 3 more years, to input patients in the database, making the necessary quality controls on incoming data, and to maintain centralized storage of biological material; b) diffuse information yielded by the database; identify and design specific studies on uniform groups of these diseases; and c) clinically characterize new PNS pathologies emerging from analysis of database information. No other international group is able to gather such an extensive case series. By continuing this cooperation, the EU would become world leader in PNS research.
