Francesca Tamarozzi1 5, Patrizia Rossi2, Fabio Galati3, Mara Mariconti 1 5, Jacopo Nicoletti 1 5 Francesca Rinaldi 1 5 , Adriano

Casulli 2, Edoardo Pozio2, Enrico Brunetti 1 4 5

1Department of Clinical, Surgical, Diagnostic and Paediatric Sciences, University of Pavia, Italy; 2 Department of Infectious, Parasitic and Immunomediated Diseases, Istituto Superiore di Sanita’, Rome, Italy; 3 SIDBAE, Information

Technology, Istituto Superiore di Sanita’, Rome, Italy; 4 Division of Infectious and Tropical Diseases, San Matteo Hospital Foundation, Pavia, Italy; 4 WHO Collaborating Centre on Clinical Management of Cystic Echinococcosis

Innovation for the Management of Echinococcosis Besançon 27-29 March 2014

The Italian Registry Of Cystic Echinococcosis:

Preliminary results

NEW CE CASES PER YEAR

Data from Dr F. Cattaneo, MD thesis, 2013

Total CE

Foreigners

Eastern Europe Africa Western Europe South America Asia

2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 Total

Italy 2400 2100 1993 1987 1865 1714 1554 1499 1338 1136 963 18445

Italians (%) 91.8 91.5 89.7 88.3 83.4 85.1 80.7 78.6 82.3 78.7 74.2 85.8

* Italian region with highest prevalence of human cases according to HDR

• Chronic

• Complex

• Neglected

Enrolled PatientsN

um

ber

of

pat

ien

ts

Total

Pavia

Paler

mo

Reggio

Em

ilia

Sassa

ri

Spalla

nzani

Pisa

Torino

S Andre

a Rom

a

Verona

Arezz

o

Vicen

za

Other

Cen

tres

0

100

200

300

400346

212

4419 3 1 1 9

443 5 5 0

Jan 2012-Feb 2014

Geographical origin of patients

Nu

mb

er

of

pati

en

ts

0

50

100

150 131 Italians (61.8%) 81 Foreigners (38.2%)

Nu

mb

er o

f p

atie

nts

2012 20130

20

40

60

80

100 94

14

78

21

Follow-up

Newdiagnosis

Visit type (Mean 1.46 visits/patient - range 1-4)

Critical issues

• Voluntary adhesion of health care centres

• Time required to fill/update the records

• Patient’s recall and previous records

• May be useful an automatic patient recall to minimize loss to follow-up?

• Regular monitoring and evaluation of the registry itself

European Registry of Cystic Echinococcosis

Acknowledgements

• Dr Giovanna Masala IZS Sardegna, Sassari, Italy

Funding : Progetto di Ricerca Corrente IZS SA 07/10 RC

• Dr Adriano Casulli ISS, Rome, Italy Funding European Union Seventh Framework Programme (FP7/2007-2013) project HERACLES, grant agreement n°[602051]

And Thank you!