The Italian National Rare Diseases Registry

Blood Transfusion

Volumn 12, Issue SUPPL. 3, 2014, Pages

  Taruscio, Domenica ^a   Kodra, Yllka ^a   Ferrari, Gianluca ^a   Vittozzi, Luciano ^a   Annicchiarico, Giuseppina ^b   Attolini, Ettore ^b   Antonelli, Antonello ^c   Barone, Rosalba ^d   Bembi, Bruno ^e   Deroma, Laura ^e   Bianchi, Fabrizio ^f   Berni, Cecilia ^b   Borsellino, Lucia ^d   Scondotto, Salvatore ^d   Benedicenti, Francesco ^g   Zuech, Paola ^h   Casucci, Paola ⁱ   Patisso, Maria Concetta ⁱ   Lallo, Domenico Di ^j   Di Nunzio, Maria Lucia ^k   Di Palma, Annunziata ^g   Volta, Matteo ^l   Vizioli, Maria ^l   Facchin, Paola ^m   Mazzucato, Monica ^m   Gabrielli, Orazio ⁿ   Della Casa, Roberto ^o   Scala, Iris ^o   Baraldo, Gedeone ^p   Daina, Erica ^q   Palka, Giandomenico ^r   Roccatello, Dario ^s,t   Modena, Vittorio ^s,t   Rossi, Mirella ^u   Tripaldi, Domenico ^v   Angione, Antonella ^v   more..

^a ISTITUTO SUPERIORE DI SANITÀ   (Italy)

^b Regional Coordination of Rare Diseases   (Italy)

^c Department for Hygiene and Health and for Social Assistance of the Autonomous Region Directorate General of Health   (Italy)

^d Department of Health Protection and Health Policies ^*  (Italy)

^e Regional Coordination Centre for Rare Diseases   (Italy)

^f INSTITUTE OF CLINICAL PHYSIOLOGY   (Italy)

^g Provincial Coordination Centre for Rare Diseases   (Italy)

^h Provincial Epidemiological Observatory   (Italy)

ⁱ Regional Directorate of Health and Social Cohesion   (Italy)

^j Public Health Agency   (Italy)

^k Directorate General V   (Italy)

^l Directorate General of Health and Social Policy   (Italy)

^m Directorate General of Health and Social Policy ^*  (Italy)

ⁿ Salesi Hospital   (Italy)

^o Salesi Hospital Clinical Pediatric ^*  (Italy)

^p Directorate General for Health   (Italy)

^q MARIO NEGRI INSTITUTE FOR PHARMACOLOGICAL RESEARCH   (Italy)

^r University Hospital of Chieti   (Italy)

^s CMID Centre of Research of Immunopathology and Rare Diseases   (Italy)

^t General and Endoscopic Surgery Unit S Giovanni Bosco Hospital   (Italy)

^u Regional Health Agency   (Italy)

^v Personal Services and the Community   (Italy)

more..

Author keywords

Italy; Public health; Rare diseases; Registry

Indexed keywords

ARTICLE; DISEASE REGISTRY; DISEASE SURVEILLANCE; ITALY; MEDICAL RECORD; PUBLIC HEALTH; RARE DISEASE; COMMUNITY CARE; EPIDEMIOLOGICAL MONITORING; FEMALE; HUMAN; MALE; RARE DISEASES; REGISTER; STANDARDS;

COMMUNITY NETWORKS; EPIDEMIOLOGICAL MONITORING; FEMALE; HUMANS; ITALY; MALE; NATIONAL HEALTH PROGRAMS; RARE DISEASES; REGISTRIES;

EID: 84901600741     PISSN: 17232007     EISSN: None     Source Type: Journal    
DOI: 10.2450/2014.0064-14s     Document Type: Article

References (13)

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7. Council Recommendation of 8 June 2009 on an action in the field of rare diseases. The Council of the European Union. Available on line at: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010: EN:PDF. Accessed on 23/08/2013.
8. European Commission. Supporting rare diseases registries and providing a European Platform for rare diseases registration. Available on line at: http://ec.europa.eu/health/rare-diseases/policy/registries/index-en.htm. Accessed on 28/08/2013.
9. Italian Ministry of Health. Decreto 18 maggio 2001, n. 279. Regolamento di istituzione della rete nazionale delle malattie rare e di esenzione dalla partecipazione al costo delle relative prestazioni sanitarie, ai sensi dell'articolo 5, comma 1, lettera b), del decreto legislativo 29 aprile 1998, n. 124. (GU n. 160 del 12-7-2001- Suppl. Ordinario n.180/L) (in Italian). Available at: http://www.iss.it/binary/cnmr/cont/DM279-2001.1205943575.pdf. Accessed on 25/03/2014.
10. Conferenza Stato Regioni. Accordo tra il Ministro della Salute, le Regioni e le Province Autonome di Trento e Bolzano sui criteri di individuazione e di aggiornamento dei Centri Interregionali di riferimento delle malattie rare. (Repertorio Atti n 1485 dell'11 luglio 2002) (in Italian). Available at: http://www.iss.it/binary/cnmr/cont/STATOREGIONI2002.1205943700.pdf. Accessed on 25/03/2014.
11. Conferenza Stato Regioni. Accordo, ai sensi dell'articolo 4 del Decreto Legislativo 28 Agosto 1997, n. 281, tra il Governo, le Regioni e le Province Autonome di Trento e Bolzano sul riconoscimento dei Centri di coordinamento regionali e/o interregionali, di Presidi assistenziali sovraregionali per patologie a bassa prevalenza e sull'attivazione dei registri regionali ed interregionali delle malattie rare. (Repertorio 103/ CSR del 10 maggio 2007) (in Italian). Available at: http://www.iss.it/binary/cnmr/cont/STATOREGIONI2007. 1205943700. pdf. Accessed on 25/03/2014.
12. Taruscio D. Il Registro Nazionale e i Registri Regionali/ interregionali delle Malattie Rare. Rapporto anno 2011. (Rapporti ISTISAN 11/20). Roma: Istituto Superiore di Sanità; 2011 (in Italian). Available on line at: http://www.iss.it/publ/index.php?lang=1&id=2529&tipo=5. Accessed on 15/11/2013.
13. Italian Ministry of Health. Piano Nazionale Malattie Rare 2013-2016. Available on line at: http://www.salute.gov.it/imgs/C-17-pagineAree-3296- listaFile-itemName-0-file. pdf. Accessed on 15/01/2014.