Punto sui nuovi farmaci per la fibrosi cistica 2013

A.O.U. A. Meyer Aula Magna (1° piano) 5 Ottobre 2013 – Il Meeting è aperto alla partecipazione delle persone assistite dal Centro ed ai loro familiari. Per i noti criteri di prevenzione delle infezioni, tutti coloro che sono portatori di Burkholderia cepacia o sono stati sottoposti a trapianto o avessero sintomi compatibili con una malattia acuta virale, come influenza o raffreddore, sono invitati a non partecipare.

Si raccomanda inoltre alle persone assistite dal Centro di mantenere tra loro una distanza minima di un metro e di utilizzare i presidi di prevenzione delle infezioni a disposizione.

Per coloro che volessero approfondire i contenuti della giornata o non potessero partecipare è a disposizione per la data del Meeting la Newsletter N. 2 in questo sito www.fibrosicisticatoscana.org

 

La sede del Meeting è presso l’Ospedale Pediatrico A. Meyer, viale Pieraccini 24, Firenze.

L’iscrizione è gratuita. Si prega di inviare entro il 27 settembre la scheda di iscrizione (qui sotto allegata) al n. di fax 055 5662470.

 

 

Vi sono molte attese sulla ricerca finalizzata ad identificare nuovi farmaci incisivi sui meccanismi della malattia. I farmaci “modulatori” della proteina CFTR agiscono a seconda delle mutazioni in gioco. Questo filone della ricerca ha avuto i primi risultati promettenti con il farmaco potenziatore ivacafor nel caso della mutazione G551D, una mutazione molto rara in Italia.

La ricerca clinica sta attualmente valutando l’efficacia di ivacaftor ed altri farmaci su altre mutazioni più comuni anche in Italia.

Il tema della ricerca nella fibrosi cistica è un tema “caldo”, che richiede momenti di aggiornamento e di riflessione: rispetto allo scorso anno, abbiamo pensato che fosse utile e stimolante riproporre l’incontro dedicato alle novità sulla ricerca, sia agli operatori che ai pazienti e alle loro famiglie.

Il Meeting ha le finalità di aggiornare e discutere sui risultati ottenuti e le prospettive aperte dai nuovi farmaci attivi sulla proteina CFTR e sui primi passi in laboratorio nell’uso delle cellule staminali. Gli elevati costi della ricerca si ripercuotono sul prezzo dei farmaci: il sistema sanitario è chiamato a identificare strategie per la sostenibilità dei costi. La ricerca clinica deve poter valutarne i benefici su diversi aspetti della malattia, considerando anche il punto di vista dei soggetti affetti. Ci interessa infine fare una riflessione iniziale sul “paziente esperto” ed il “genitore esperto” ed il loro coinvolgimento diretto nella ricerca clinica: le prime esperienze ed un dibattito iniziale vanno nella direzione della centralità del soggetto affetto sia nell’assistenza che nella ricerca.

 

 

Relatori e moderatori

F. Bambi Immunoematologia e Terapie Cellulari, AOU Meyer

F. Berti Lega Italiana Fibrosi Cistica – Onlus

C. Braggion Centro FC, AOU Meyer

R. Buzzetti IPCOR – SIFC, Bergamo

P. Funghi Comitato Etico Area Vasta Sud Est, Siena

L. Galietta Lab. Genetica Molecolare, Ist. G. Gaslini, Genova

T. Langiano Direttore Generale, AOU Meyer

A.S. Neri Centro FC, AOU Meyer

 

 

PROGRAMMA

10.30 Regitrazione, saluti ed apertura

1° Sessione – Modera A.S. Neri

 

11.00 Efficacia e sicurezza dei farmaci modulatori della proteina

CFTR: i risultati della ricerca clinica

C. Braggion

 

11.30 Le prospettive della ricerca sui farmaci attivi sulla proteina

CFTR

L. Galietta

 

12.00 Cellule staminali e terapie avanzate: criticità e prospettive

F. Bambi

 

12.30 Discussione

 

13.00 Lunch

2° Sessione – Modera F. Berti

 

14.00 Razionalizzazione o razionamento? L’esempio dei farmaci

innovativi

T. Langiano

 

14.30 Le misure di esito orientate ai pazienti nella ricerca clinica

R. Buzzetti

 

15.00 Il coinvolgimento diretto dei pazienti nella ricerca clinica:

esperienze iniziali e riflessioni

P. Funghi

 

15.30 Discussione

 

16.00 Conclusioni

 

Organizzazione: C. Braggion, A.S. Neri, L. Zavataro, B. Berti ( c.braggion@meyer.it – tel. 055 5662510)

 

Il Meeting è stato realizzato con la collaborazione ed il contributo della Lega Italiana Fibrosi Cistica – Associazione Toscana Onlus

 

Siamo molto riconoscenti a Fabrizio Benelli per la realizzazione dell’immagine di copertina (www.fabriziobenelli.com)

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