Report sulle malattie rare in piemonte
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Report del Registro per le mala/e rare del
Piemonte e della Valle d’Aosta
Centro di Coordinamento Rete Interregionale per le Malattie Rare del Piemonte e della Valle d’Aosta
Simone Baldovino
Torino, 21 gennaio 2011
Centro di Ricerchedi Immunopatologia eDocumentazione su Malattie RareStruttura Complessa a DirezioneUniversitaria di Immunologia ClinicaCoordinamento Interregionale delle MalattieRare del Piemonte e della Valle d’AostaDirettore: Dario Roccatello
14ºCONVEGNO
Patologia immunee malattie orfane 2011
Centro CongressiTorino IncontraVia Nino Costa, 8 - Torino
Torino20-22 gennaio
2011
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50
esentate in Piemonte e VdA
Circa 1000 esentate in Italia
6000 mala/e rare secondo l’OMS
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Totale segnalazioni: 11500
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2009
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base per la redazione di Normative Nazionali e Regionali
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base per la redazione di Normative Nazionali e Regionali
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Si intende appropriato un intervento per cui “il beneficio atteso di salute supera le conseguenze negative attese di un margine sufficientemente ampio che la procedura valga la pena di essere praticata, eccetto il costo”
RH Brook - 1994 - RAND Corporation
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USA Fine anni ’80 - primi anni ‘90
Appropriatezza = assenza di spreco di risorse
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I quadrimestre 2009 10.747.026,48I quadrimestre 2010 11.073.176,86variazione % 3,03
Classe SSNImporto I
quadrimestre 2010
Incidenza su
spesa totale
Classe H 5.719.215,26 55,37%Classe A 4.493.156,19 43,50%Classe C 115.849,69 1,12%Classe B 33,59 0,00%Totale complessivo 10.328.254,73 100,00%
Farmaci CON AIC 10.328.254,73Farmaci SENZA Aic 744.922,13Totale complessivo 11.073.176,86
CategoriaImporto I
quadrimestre 2010
Incidenza % su spesa totale
Farmaco 10.328.254,73 93,27%Estero 377.628,97 3,41%SostanzaL648 237.753,49 2,15%Emocomponente 79.608,94 0,72%Ossigeno 38.747,37 0,35%Vaccino 6.894,26 0,06%Galenico 4.289,10 0,04%Totale complessivo 11.073.176,86 100,00%
Analisi dei farmaci in distribuzione diretta
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Analisi di Pareto
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Analisi di Pareto
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RDG020
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RDG020
290
169 130
79
60
32 31
27
23 18 17 5 5
3 2 1 1 1 1 1 1 OSP. INFANT. REGINA MARGHERITA
TORINO NORD EMERGENZA SAN GIOVANNI BOSCO OSPEDALE MAURIZIANO UMBERTO I -‐ TORINO OSPEDALE SAN LAZZARO -‐ ALBA
OSPEDALE CIVILE DI IVREA
OSP.CIVILE SS.ANTONIO E BIAGIO
OSP.S. GIOV.BATTISTA MOLINETTE
OSP. MAGGIORE DELLA CARITA'
OSP. MAGGIORE SS. ANNUNZIATA SAVIGLIANO CN1 AZIENDA OSPEDALIERO UNIVERSITARIA S.LUIGI AZ. OSPEDAL. S. CROCE E CARLE
OSP.DEGLI INFERMI DI BIELLA
OSPEDALE CIVILE "E.AGNELLI"
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RDG020
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RDG020
• Obbligo di inserimento dei piani terapeuUci nel registro interregionale anche per i piani extraregionali e per i farmaci somministraU in regime di ricovero
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Analisi di Pareto
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RDG020 RG0121 RM0030 RM0091Ambrisentan 9.430,80 22.642,06 32.072,86Epoprostenolo 7.724,16 47.032,10 54.756,26Sitaxentan 52.237,50 7.138,32 59.375,82Treprostinil 65.088,58 7.231,95 72.320,53
Principio AttivoImporto complessivo I quadrim
2010
Codice Patologia
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578 piani terapeutici Bosentan
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578 piani terapeutici Bosentan
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578 piani terapeutici Bosentan
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578 piani terapeutici Bosentan
OSP.S. GIOV.BATTISTA MOLINETTE AZ. OSPEDAL. S. CROCE E CARLE AZIENDA OSPEDALIERO UNIVERSITARIA S.LUIGI OSPEDALE MAURIZIANO UMBERTO I -‐ TORINO STABILIMENTO OSPEDALIERO CASTELLI OSPEDALE SANT'ANDREA
OSP. MAGGIORE DELLA CARITA' OSPEDALE CIVILE DI IVREA
TORINO NORD EMERGENZA SAN GIOVANNI BOSCO
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EBM
La medicina basata sulle prove di efficacia richiede che le migliori prove derivanti dalla ricerca siano integrate dall’esperienza clinica e dalla valutazione del singolo paziente, con l’unicità del suo s i s t ema d i v a l o r i e de l l e circostanze in cui si manifesta la malattia
Straus ES et al, Evidence Based Medicine, Pensiero Scientifico Editore 2007
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Applicare l’appropriatezza significa risparmiare?
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Applicare l’appropriatezza significa risparmiare?
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• € 4.724.090
• € 2.357.296
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300000 euro
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US $14
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9.923.664 euro