The European Register of Cystic Echinococcosis, ERCE: State-of-the-art five years after its launch

Patrizia Rossi; Francesca Tamarozzi; Fabio Galati; Okan Akhan; Carmen Michaela Cretu; Kamenna Vutova; Mar Siles-Lucas; Enrico Brunetti; Adriano Casulli; ERCE network

doi:10.1186/s13071-020-04101-6

The European Register of Cystic Echinococcosis, ERCE: State-of-the-art five years after its launch

Standard

The European Register of Cystic Echinococcosis, ERCE: State-of-the-art five years after its launch. / Rossi, Patrizia; Tamarozzi, Francesca; Galati, Fabio; Akhan, Okan; Cretu, Carmen Michaela; Vutova, Kamenna; Siles-Lucas, Mar; Brunetti, Enrico; Casulli, Adriano; ERCE network.

in: PARASITE VECTOR, Jahrgang 13, Nr. 1, 236, 07.05.2020, S. 236.

Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung

Harvard

Rossi, P, Tamarozzi, F, Galati, F, Akhan, O, Cretu, CM, Vutova, K, Siles-Lucas, M, Brunetti, E, Casulli, A & ERCE network 2020, 'The European Register of Cystic Echinococcosis, ERCE: State-of-the-art five years after its launch', PARASITE VECTOR, Jg. 13, Nr. 1, 236, S. 236. https://doi.org/10.1186/s13071-020-04101-6

APA

Rossi, P., Tamarozzi, F., Galati, F., Akhan, O., Cretu, C. M., Vutova, K., Siles-Lucas, M., Brunetti, E., Casulli, A., & ERCE network (2020). The European Register of Cystic Echinococcosis, ERCE: State-of-the-art five years after its launch. PARASITE VECTOR, 13(1), 236. [236]. https://doi.org/10.1186/s13071-020-04101-6

Vancouver

Rossi P, Tamarozzi F, Galati F, Akhan O, Cretu CM, Vutova K et al. The European Register of Cystic Echinococcosis, ERCE: State-of-the-art five years after its launch. PARASITE VECTOR. 2020 Mai 7;13(1):236. 236. https://doi.org/10.1186/s13071-020-04101-6

Bibtex

@article{c21ff5dbf19d461880c76c69dafdd7f9,

title = "The European Register of Cystic Echinococcosis, ERCE: State-of-the-art five years after its launch",

abstract = "BACKGROUND: The real burden of human cystic echinococcosis (CE) remains elusive, due to the peculiar characteristics of the disease and the heterogeneous and incomplete data recording of clinical cases. Furthermore, official notification systems do not collect pivotal clinical information, which would allow the comparison of different treatment outcomes, and thus circumvent the difficulty of implementing clinical trials for CE. The Italian Register of CE (RIEC) was launched in 2012 and expanded in 2014 into the European Register of CE (ERCE). The primary aim of the ERCE was to highlight the magnitude of CE underreporting, through the recording of cases that were not captured by official records. We present an overview of data collated in the ERCE and discuss its future, five years after its inception.METHODS: The ERCE database was explored on March 31st 2019; data concerning participating centres and registered cases were descriptively analysed.RESULTS: Forty-four centres from 15 countries (7 non-European) were affiliated to the ERCE. Thirty-four centres (77%) registered at least one patient; of these, 18 (53%) recorded at least one visit within the past 18 months. A total of 2097 patients were registered, 19.9% of whom were immigrants. Cyst characteristics were reported for at least one cyst at least in one visit in 1643 (78.3%) patients, and cyst staging was used by 27 centres. In total, 3386 cysts were recorded at first registration; mostly located in the liver (75.5%). Data concerning clinical management could be analysed for 920 {"}cyst stage-location-management{"} observations, showing great heterogeneity in the implementation of the stage-specific management approach recommended by the WHO.CONCLUSIONS: The ERCE achieved its goal in showing that CE is a relevant but neglected public health problem in Europe and beyond, since a proportion of patients reaching medical attention are not captured by official notification systems. The ERCE may provide a valuable starting platform to complement hospital-derived data, to obtain a better picture of the epidemiology of clinical CE, and to collect clinical data for the issue of evidence-based recommendations. The ERCE will be expanded into the International Register of CE (IRCE) and restructured aiming to overcome its current criticalities and fulfil these aims.",

keywords = "Case series, Cystic echinococcosis, Public health awareness, Register, Echinococcosis/diagnosis, Public Health, Echinococcus, Prevalence, Humans, Male, Neglected Diseases/diagnosis, Lung/parasitology, Animals, Europe/epidemiology, Italy/epidemiology, Female, Registries, Liver/parasitology, Databases, Factual",

author = "Patrizia Rossi and Francesca Tamarozzi and Fabio Galati and Okan Akhan and Cretu, {Carmen Michaela} and Kamenna Vutova and Mar Siles-Lucas and Enrico Brunetti and Adriano Casulli and {ERCE network} and A. Angheben and {Belhassen Garcia}, M. and N. Bagmet and S. Borys and S. Bresson-Hadni and F. Demonmerot and L. Millon and F. Bruschi and G. Calleri and C. Chemla and B. Castiglioni and Chianura, {L. G.} and B. Dezs{\'e}nyi and Harandi, {M. F.} and S. Nasibi and G. Ismailova and Giordani, {M. T.} and V. Gjoni and R. Shkjezi and L. Gogichaishvili and D. Goletti and F. Karim and E. Lapini and S. Mastrandrea and F. L{\"o}tsch and G. Menozzi and R. Corsini and P. Milhailescu and S. Orsten and A. Paugam and M. Ramharter and A. Recordare and F. Salvador and A. Teggi and C. Torti and G. Vitale and A. Vola and M. Mariconti and R. Lissandrin and M. Wallon and L. Zammarchi and F. Bartalesi",

year = "2020",

month = may,

day = "7",

doi = "10.1186/s13071-020-04101-6",

language = "English",

volume = "13",

pages = "236",

journal = "PARASITE VECTOR",

issn = "1756-3305",

publisher = "BioMed Central Ltd.",

number = "1",

}

RIS

TY - JOUR

T1 - The European Register of Cystic Echinococcosis, ERCE: State-of-the-art five years after its launch

AU - Rossi, Patrizia

AU - Tamarozzi, Francesca

AU - Galati, Fabio

AU - Akhan, Okan

AU - Cretu, Carmen Michaela

AU - Vutova, Kamenna

AU - Siles-Lucas, Mar

AU - Brunetti, Enrico

AU - Casulli, Adriano

AU - ERCE network

AU - Angheben, A.

AU - Belhassen Garcia, M.

AU - Bagmet, N.

AU - Borys, S.

AU - Bresson-Hadni, S.

AU - Demonmerot, F.

AU - Millon, L.

AU - Bruschi, F.

AU - Calleri, G.

AU - Chemla, C.

AU - Castiglioni, B.

AU - Chianura, L. G.

AU - Dezsényi, B.

AU - Harandi, M. F.

AU - Nasibi, S.

AU - Ismailova, G.

AU - Giordani, M. T.

AU - Gjoni, V.

AU - Shkjezi, R.

AU - Gogichaishvili, L.

AU - Goletti, D.

AU - Karim, F.

AU - Lapini, E.

AU - Mastrandrea, S.

AU - Lötsch, F.

AU - Menozzi, G.

AU - Corsini, R.

AU - Milhailescu, P.

AU - Orsten, S.

AU - Paugam, A.

AU - Ramharter, M.

AU - Recordare, A.

AU - Salvador, F.

AU - Teggi, A.

AU - Torti, C.

AU - Vitale, G.

AU - Vola, A.

AU - Mariconti, M.

AU - Lissandrin, R.

AU - Wallon, M.

AU - Zammarchi, L.

AU - Bartalesi, F.

PY - 2020/5/7

Y1 - 2020/5/7

N2 - BACKGROUND: The real burden of human cystic echinococcosis (CE) remains elusive, due to the peculiar characteristics of the disease and the heterogeneous and incomplete data recording of clinical cases. Furthermore, official notification systems do not collect pivotal clinical information, which would allow the comparison of different treatment outcomes, and thus circumvent the difficulty of implementing clinical trials for CE. The Italian Register of CE (RIEC) was launched in 2012 and expanded in 2014 into the European Register of CE (ERCE). The primary aim of the ERCE was to highlight the magnitude of CE underreporting, through the recording of cases that were not captured by official records. We present an overview of data collated in the ERCE and discuss its future, five years after its inception.METHODS: The ERCE database was explored on March 31st 2019; data concerning participating centres and registered cases were descriptively analysed.RESULTS: Forty-four centres from 15 countries (7 non-European) were affiliated to the ERCE. Thirty-four centres (77%) registered at least one patient; of these, 18 (53%) recorded at least one visit within the past 18 months. A total of 2097 patients were registered, 19.9% of whom were immigrants. Cyst characteristics were reported for at least one cyst at least in one visit in 1643 (78.3%) patients, and cyst staging was used by 27 centres. In total, 3386 cysts were recorded at first registration; mostly located in the liver (75.5%). Data concerning clinical management could be analysed for 920 "cyst stage-location-management" observations, showing great heterogeneity in the implementation of the stage-specific management approach recommended by the WHO.CONCLUSIONS: The ERCE achieved its goal in showing that CE is a relevant but neglected public health problem in Europe and beyond, since a proportion of patients reaching medical attention are not captured by official notification systems. The ERCE may provide a valuable starting platform to complement hospital-derived data, to obtain a better picture of the epidemiology of clinical CE, and to collect clinical data for the issue of evidence-based recommendations. The ERCE will be expanded into the International Register of CE (IRCE) and restructured aiming to overcome its current criticalities and fulfil these aims.

AB - BACKGROUND: The real burden of human cystic echinococcosis (CE) remains elusive, due to the peculiar characteristics of the disease and the heterogeneous and incomplete data recording of clinical cases. Furthermore, official notification systems do not collect pivotal clinical information, which would allow the comparison of different treatment outcomes, and thus circumvent the difficulty of implementing clinical trials for CE. The Italian Register of CE (RIEC) was launched in 2012 and expanded in 2014 into the European Register of CE (ERCE). The primary aim of the ERCE was to highlight the magnitude of CE underreporting, through the recording of cases that were not captured by official records. We present an overview of data collated in the ERCE and discuss its future, five years after its inception.METHODS: The ERCE database was explored on March 31st 2019; data concerning participating centres and registered cases were descriptively analysed.RESULTS: Forty-four centres from 15 countries (7 non-European) were affiliated to the ERCE. Thirty-four centres (77%) registered at least one patient; of these, 18 (53%) recorded at least one visit within the past 18 months. A total of 2097 patients were registered, 19.9% of whom were immigrants. Cyst characteristics were reported for at least one cyst at least in one visit in 1643 (78.3%) patients, and cyst staging was used by 27 centres. In total, 3386 cysts were recorded at first registration; mostly located in the liver (75.5%). Data concerning clinical management could be analysed for 920 "cyst stage-location-management" observations, showing great heterogeneity in the implementation of the stage-specific management approach recommended by the WHO.CONCLUSIONS: The ERCE achieved its goal in showing that CE is a relevant but neglected public health problem in Europe and beyond, since a proportion of patients reaching medical attention are not captured by official notification systems. The ERCE may provide a valuable starting platform to complement hospital-derived data, to obtain a better picture of the epidemiology of clinical CE, and to collect clinical data for the issue of evidence-based recommendations. The ERCE will be expanded into the International Register of CE (IRCE) and restructured aiming to overcome its current criticalities and fulfil these aims.

KW - Case series

KW - Cystic echinococcosis

KW - Public health awareness

KW - Register

KW - Echinococcosis/diagnosis

KW - Public Health

KW - Echinococcus

KW - Prevalence

KW - Humans

KW - Male

KW - Neglected Diseases/diagnosis

KW - Lung/parasitology

KW - Animals

KW - Europe/epidemiology

KW - Italy/epidemiology

KW - Female

KW - Registries

KW - Liver/parasitology

KW - Databases, Factual

UR - http://www.scopus.com/inward/record.url?scp=85084384939&partnerID=8YFLogxK

U2 - 10.1186/s13071-020-04101-6

DO - 10.1186/s13071-020-04101-6

M3 - SCORING: Journal article

C2 - 32381109

AN - SCOPUS:85084384939

VL - 13

SP - 236

JO - PARASITE VECTOR

JF - PARASITE VECTOR

SN - 1756-3305

IS - 1

M1 - 236

ER -