The Piedmont and Aosta Valley Consortium of Systemic Amyloidosis was created in 2008 as a part of the Interregional Network of Rare Diseases. The Consortium purposes included (1) census of patients with systemic amyloidosis, (2) survey of clinical facilities for patients, (3) dissemination of knowledge about amyloidosis and (4) specific training of physicians in order to improve diagnostic sensitivity, (5) promotion of sensitive diagnostic methods, (7) encouragement of a greater cooperation among health care providers, (8) development of specific diagnostic and therapeutic protocols, and (9) initiation of study protocols. Participation in the consortium was spontaneous. To date, the consortium is composed of 85 physicians representing 14 specialties and coming from 12 institutions. From 2007 to 2011, 73 cases of amyloidosis have been reported. Considering a population of 4578000 people a prevalence of 16/1000000 and an incidence of 3.98/1000000/year can be estimated. The Consortium has also made a survey on diagnostic and assistance facilities. The results were made available to patients and to general practitioners by editing both specific brochures and web sites. The diagnostic sensitivity has been checked by an external quality evaluation of laboratory methods for primary amyloidosis (immunofixation and free light chain assay). The Consortium has also promoted the development of genetic tests for major forms of familial amyloidosis (MEFV, MVK, TNFRA1, TTR, APOA1). Currently, the consortium is developing diagnostic and therapeutic local Consensus Statements based on international guidelines and is promoting Continue Medical Education courses for physicians to increase the overall diagnostic sensitivity. The abstract has been written on behalf of all participants in the consortium.
Piedmont and Aosta Valley Consortium of Systemic Amyloidosis: results of a four year experience
BALDOVINO, Simone;MAZZUCCO, Gianna;CAVALLO, Federica;Luca Pradotto;ROCCATELLO, Dario
2012-01-01
Abstract
The Piedmont and Aosta Valley Consortium of Systemic Amyloidosis was created in 2008 as a part of the Interregional Network of Rare Diseases. The Consortium purposes included (1) census of patients with systemic amyloidosis, (2) survey of clinical facilities for patients, (3) dissemination of knowledge about amyloidosis and (4) specific training of physicians in order to improve diagnostic sensitivity, (5) promotion of sensitive diagnostic methods, (7) encouragement of a greater cooperation among health care providers, (8) development of specific diagnostic and therapeutic protocols, and (9) initiation of study protocols. Participation in the consortium was spontaneous. To date, the consortium is composed of 85 physicians representing 14 specialties and coming from 12 institutions. From 2007 to 2011, 73 cases of amyloidosis have been reported. Considering a population of 4578000 people a prevalence of 16/1000000 and an incidence of 3.98/1000000/year can be estimated. The Consortium has also made a survey on diagnostic and assistance facilities. The results were made available to patients and to general practitioners by editing both specific brochures and web sites. The diagnostic sensitivity has been checked by an external quality evaluation of laboratory methods for primary amyloidosis (immunofixation and free light chain assay). The Consortium has also promoted the development of genetic tests for major forms of familial amyloidosis (MEFV, MVK, TNFRA1, TTR, APOA1). Currently, the consortium is developing diagnostic and therapeutic local Consensus Statements based on international guidelines and is promoting Continue Medical Education courses for physicians to increase the overall diagnostic sensitivity. The abstract has been written on behalf of all participants in the consortium.
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