Italian Registry of Haemophilia and Allied Disorders. Objectives, methodology and data analysis.
Details
Serval ID
serval:BIB_B4D8030D5BC1
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Italian Registry of Haemophilia and Allied Disorders. Objectives, methodology and data analysis.
Journal
Haemophilia
Working group(s)
Association of Italian Hemophilia Centres Directors
Contributor(s)
Contino L., Accorsi A., Ciavarella N., Schiavoni M., Scaraggi FA., Rodorigo G., Valdré L., Targhetta R., Tagariello G., Radossi P., Musso R., Cultrera D., Muleo G., Iannacaro P., Biasioli C., Testa S., Alatri A., Vincenzi D., Scapoli G., Morfini M., Molinari AC., Boeri E., Caprino D., Mariani G., Lapecorella M., Carloni MT., Cantori I., Mannucci PM., Santagostino E., Gringeri A., Federici AB., Marietta M., Pedrazzoli P., Di Minno G., Coppola A., Perricone C., Schiavulli M., Rocino A., Berrettini M., Zanon E., Mancuso G., Siragusa S., Malato A., Saccullo G., Tagliaferri A., Rivolta F., Iorio A., Oliovecchio E., Ferrante F., Dragani A., Rossi A., Mancino A., Albertini P., Macchi S., Hassan J., D'Inca M., De Rossi G., Luciani M., Landolfi R., Mazzucconi MG., Santoro C., Piseddu G., Carla Schinco P., Rossetti G., Barillari G., Feola G., Gandini G., Franchini M., Castaman G.
ISSN
1365-2516 (Electronic)
ISSN-L
1351-8216
Publication state
Published
Issued date
2008
Peer-reviewed
Oui
Volume
14
Number
3
Pages
444-453
Language
english
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov't
Abstract
National haemophilia registries are powerful instruments to support health care and research. A national registry was established in Italy by the Ministry of Health until 1999. Since 2003 the Italian Association of Haemophilia Centres (AICE) started a new programme aiming at building up the Italian Registry of Haemophilia and Allied Disorders. The AICE identified an expert panel to steer the registry. A computer software to assist patient management was developed and all the AICE-affiliated haemophilia treatment centres (HTC) were prompted to adopt it. Twice a year a predefined set of anonymized data is centralized and merged into a national database. Duplicated entries are managed through a confidentiality sparing mechanism. The database covers sociodemographic, clinical, laboratory and treatment data. A subset of data are shared with the Ministry of Health (Istituto Superiore di Sanità,ISS).Overall, data were collected six times by 43 of 49 HTC; 41 centres updated their patients' records up to December 2006. The database contains 6632 unique records, 442 of them referring to dead patients. Database growth and missing data clearance showed a constantly positive trend over time. The database has collected records of the following alive patients - haemophilia A: 1364 severe, 398 moderate and 935 mild; haemophilia B: 231 severe, 138 moderate and 204 mild; von Willebrand's disease: 1208 type 1, 346 type 2 and 96 type 3. Inhibitor patients were 296 (of which 194 high responders and 65 low responders).The Italian registry run by AICE adds to the list of the available national haemophilia registries and is intended to establish treatment guidelines and foster research projects in Italy.
Keywords
Adolescent, Adult, Age of Onset, Aged, Blood Coagulation Disorders, Inherited/epidemiology, Child, Child, Preschool, Data Interpretation, Statistical, Databases as Topic/statistics & numerical data, Female, Humans, Infant, Italy/epidemiology, Male, Middle Aged, Registries, Severity of Illness Index, Societies, Medical
Pubmed
Web of science
Create date
14/02/2013 14:31
Last modification date
03/06/2020 6:26
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