Screening and surveillance practices for Multiple Endocrine Neoplasia type 1‐related Neuroendocrine Tumours in European Neuroendocrine Tumor Society Centers of Excellence ( <scp>ENETS CoE</scp> )—An <scp>ENETS MEN1</scp> task force questionnaire stud

Multiple Endocrine Neoplasia type 1 (MEN1) Clinical Practice Guidelines (2012) are predominantly based on expert opinion due to limited available evidence at the time, leaving room for interpretation and variation in practices. Evidence on the natural course of MEN1-related neuroendocrine tumours (NET) and the value of screening programs has increased and new imaging techniques have emerged. The aim of this study is to provide insight in the current practices of screening and surveillance for MEN1-related NETs in ENETS Centers of Excellence (CoEs). A clinical practice questionnaire was distributed among all 65 ENETS CoEs. Response rate was 91% (59/65). In 14% of CoEs <10 patients, in 50% 10-49, in 31% 50-100 and in 3 centres (5%) >100 patients with MEN1 are seen. Practices with regard to screening and surveillance of NETs were markedly heterogeneous. Differences between countries were noted in the use of gut hormones for biochemical screening and the choice for imaging modality for screening/surveillance of pancreatic NETs (PanNETs). Magnetic resonance imaging (MRI) is the preferred modality for screening and surveillance of PanNETs, whereas this is computed tomography (CT) for thoracic NETs. Practices regarding screening for thoracic NETs were more homogeneous among larger volume CoEs, with longer screening intervals. The majority of CoEs tailored the surveillance of small pancreatic and lung NETs to observed growth rate. 68% of CoEs advise patients with clinical MEN1 with negative genetic testing to undergo periodic screening like mutation-positive patients. In conclusion, there is still marked heterogeneity in practice, although there are also common trends. Differences were sometimes associated with volume or country, but often no association was found. This underscores the need for clear and evidence-based practice recommendations.

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Journal
Journal of Neuroendocrinology
Published
2024-11-26
DOI
https://doi.org/10.1111/jne.13468
Citations
4
Primary Topic
Neuroendocrine Tumor Research Advances
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article
Field-Weighted Citation Impact
1.55
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article

Screening and surveillance practices for Multiple Endocrine Neoplasia type 1‐related Neuroendocrine Tumours in European Neuroendocrine Tumor Society Centers of Excellence ( ENETS CoE )—An ENETS MEN1 task force questionnaire stud

Philippe Ruszniewski, Andreas Pascher, Bruno Niederle, Antongiulio Faggiano et al.
4 citations
Journal of Neuroendocrinology
Neuroendocrine Tumor Research Advances
1.55
article

Screening and surveillance practices for Multiple Endocrine Neoplasia type 1‐related Neuroendocrine Tumours in European Neuroendocrine Tumor Society Centers of Excellence ( ENETS CoE )—An ENETS MEN1 task force questionnaire stud

Philippe Ruszniewski, Andreas Pascher, Bruno Niederle, Antongiulio Faggiano, Valentina Ambrosini, Gerlof D. Valk, Guido Rindi, Gregory Kaltsas, Dermot O’Toole, Aurel Perren, E.J.M. Nieveen van Dijkum, Jo Grey, Ulrich Knigge, James R. Howe, Massimo Falconi, Susana Belli, Timon Vandamme, Stefano Partelli, Timm Denecke, Detlef K. Bartsch, Carolina R C Pieterman, Juan W. Valle, Stefan Stättner, Marie‐Pierre Vullierme, Simona Grozinsky‐Glasberg, Mikkel Andreassen, Teodora Kolarova, Staffan Welin, Nehara Begum
article en
4 citations

Abstract

Multiple Endocrine Neoplasia type 1 (MEN1) Clinical Practice Guidelines (2012) are predominantly based on expert opinion due to limited available evidence at the time, leaving room for interpretation and variation in practices. Evidence on the natural course of MEN1-related neuroendocrine tumours (NET) and the value of screening programs has increased and new imaging techniques have emerged. The aim of this study is to provide insight in the current practices of screening and surveillance for MEN1-related NETs in ENETS Centers of Excellence (CoEs). A clinical practice questionnaire was distributed among all 65 ENETS CoEs. Response rate was 91% (59/65). In 14% of CoEs <10 patients, in 50% 10-49, in 31% 50-100 and in 3 centres (5%) >100 patients with MEN1 are seen. Practices with regard to screening and surveillance of NETs were markedly heterogeneous. Differences between countries were noted in the use of gut hormones for biochemical screening and the choice for imaging modality for screening/surveillance of pancreatic NETs (PanNETs). Magnetic resonance imaging (MRI) is the preferred modality for screening and surveillance of PanNETs, whereas this is computed tomography (CT) for thoracic NETs. Practices regarding screening for thoracic NETs were more homogeneous among larger volume CoEs, with longer screening intervals. The majority of CoEs tailored the surveillance of small pancreatic and lung NETs to observed growth rate. 68% of CoEs advise patients with clinical MEN1 with negative genetic testing to undergo periodic screening like mutation-positive patients. In conclusion, there is still marked heterogeneity in practice, although there are also common trends. Differences were sometimes associated with volume or country, but often no association was found. This underscores the need for clear and evidence-based practice recommendations.

Journal of NeuroendocrinologyVol. 37(1)
Università Cattolica del Sacro Cuore (IT), University of Bern (CH), Uppsala University (SE), University of Copenhagen (DK), University of Iowa (US), University of Antwerp (BE), Vita-Salute San Raffaele University (IT), Philipps University of Marburg (DE), Délégation Paris 7 (FR), National and Kapodistrian University of Athens (GR), Université Paris Cité (FR), Trinity College Dublin (IE), Hôpital Beaujon (FR), Hadassah Medical Center (IL), Agostino Gemelli University Polyclinic (IT), Copenhagen University Hospital (DK), Rigshospitalet (DK), University of Manchester (GB), University Medical Center Utrecht (NL), Antwerp University Hospital (BE), University Hospital Münster (DE), St. Vincent's University Hospital (IE), Azienda USL di Bologna (IT), Azienda Ospedaliera Sant'Andrea (IT), University Hospital Leipzig (DE), Instituto Alexander Fleming (AR), Cancer Research UK Manchester Institute (GB), Cholangiocarcinoma Foundation (US), Istituti di Ricovero e Cura a Carattere Scientifico (IT), Johannes Wesling Klinikum Minden (DE), Istituto di Ricovero e Cura a Carattere Scientifico San Raffaele (IT), Medical University of Vienna (AT), Sapienza University of Rome (IT), University of Amsterdam (NL), Ruhr University Bochum (DE), University of Bologna (IT)
Partnerships for the goals
Openalex Percentile: Top 15%
Neuroendocrine Tumor Research Advances
1.55
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