Journal 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 study
Journal of neuroendocrinology, Vol.37(1), e13468
01/2025
DOI: 10.1111/jne.13468
PMCID: PMC11750319
PMID: 39587981
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.
Details
- Title: Subtitle
- 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 study
- Creators
- Carolina R. C. Pieterman - University Medical Center UtrechtSimona Grozinsky-Glasberg - Hadassah Medical CenterDermot O'Toole - St. Vincent's University HospitalJames R. Howe - University of IowaValentina Ambrosini - University of BolognaSusana H. Belli - Instituto Alexander FlemingMikkel Andreassen - Copenhagen University HospitalNehara Begum - Johannes Wesling Klinikum MindenTimm Denecke - University Hospital LeipzigAntongiulio Faggiano - Azienda Ospedaliera Sant'AndreaMassimo Falconi - Vita-Salute San Raffaele UniversityJo Grey - AMEND (Association for Multiple Endocrine Neoplasia Disorder) Tornbridge UKUlrich P. Knigge - RigshospitaletTeodora Kolarova - Executive Director International Neuroendocrine Cancer Alliance (INCA) Boston Massachusetts USABruno Niederle - Medical University of ViennaEls Nieveen van Dijkum - University of AmsterdamStefano Partelli - Vita-Salute San Raffaele UniversityAndreas Pascher - University Hospital MünsterGuido Rindi - Agostino Gemelli University PolyclinicPhilippe Ruszniewski - Hôpital BeaujonStefan Stättner - Department of General, Visceral and Vascular Surgery, Salzkammergut Klinikum Vöcklabruck, Oberösterreichische Gesundheitsholding OÖG Vöcklabruck AustriaTimon Vandamme - University of AntwerpJuan W. Valle - University of ManchesterMarie‐Pierre Vullierme - Université Paris CitéStaffan Welin - Uppsala UniversityAurel Perren - University of BernDetlef K. Bartsch - Philipps University of MarburgGregory K. Kaltsas - National and Kapodistrian University of AthensGerlof D. Valk - University Medical Center Utrecht
- Resource Type
- Journal article
- Publication Details
- Journal of neuroendocrinology, Vol.37(1), e13468
- DOI
- 10.1111/jne.13468
- PMID
- 39587981
- PMCID
- PMC11750319
- NLM abbreviation
- J Neuroendocrinol
- ISSN
- 0953-8194
- eISSN
- 1365-2826
- Publisher
- Wiley; HOBOKEN
- Language
- English
- Electronic publication date
- 11/26/2024
- Date published
- 01/2025
- Academic Unit
- Surgery
- Record Identifier
- 9984751755702771
Metrics
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