ENETS Guidelines & Standards of Care

Several guidelines on the management of neuroendocrine tumors have been published by ENETS and by various expert groups and societies over the past 20 years. Novel diagnostics and treatment options, as well as an aim to move towards an individualised approach, and precision medicine for our patients have developed over the past few years. The broadened diagnostic spectrum, multiple therapy options in general, options for choosing the most promising individual therapies, and therapy sequences have made their way into the clinics.

ENETS Guidelines

Log into MY ENETS to read the brand new guidance paper on CS & CHD, as well as current and past guidelines.

New approach to guidance papers in 2021 - 2022

In 2022, ENETS is in the process of establishing question-based guidance papers, written by experts in the field. The purpose of these guidance papers is to collect the latest development and present comprehensive guidance to all our colleagues, helping them to establish a best-practice solution for their patients in their daily work.

All guidance papers will be published in the Journal of Neuroendocrinology. There is open access for the first few weeks after publication, and ENETS members may view the guidance paper free of charge via MY ENETS at any time.

We are happy to share with you the first publication of the series, which is the guidance paper on Carcinoid Syndrome (CS) and Carcinoid Heart Disease (CHD), providing advice on the diagnosis and management of CS, with special emphasis on CHD.

ENETS is working on nine new and updated guidelines in the following areas:

  • Pulmonary NET
  • Gastroduodenal NETs
  • Functioning pancreatic NETs
  • Non-functioning pancreatic NETs
  • Small intestinal NETs
  • Appendiceal NETs
  • Colorectal NETs
  • Hepatic metastases in NETs
  • NEC / MiNEN.

ENETS guidance paper for CS and CHD

The new ENETS guidance paper for Carcinoid Syndrome (CS) and Carcinoid Heart Disease (CHD) was published on 25 April 2022 in the Journal of Neuroendocrinology.

ENETS Consensus Guidelines from 2016

These are the updated Guidelines for diagnosis and therapy of NEN from 2012.

1. ENETS 2016 Consensus Guidelines Update for Gastroduodenal Neuroendocrine Neoplasms
Delle Fave GF, O'Toole D, Sundin A, Taal B, Ferolla P, Ramage J, Ferone D, Ito T, Weber W, Zheng-Pei Z, De Herder WW, Pascher A, Ruszniewski P; all other Vienna Consensus Conference participants.

2. ENETS 2016 Consensus Guidelines Update for Neuroendocrine Neoplasm of the Jejunum and Ileum
Niederle B, Pape UF, Costa F, Gross D, Kelestimur F, Knigge U, Öberg K, Pavel M, Perren A, Toumpanakis C, O'Connor J, O'Toole D, Krenning E, Reed N, Kianmanesh R; all other Vienna Consensus Conference participants.

3. ENETS 2016 Consensus Guidelines for the Management of Patients with Digestive Neuroendocrine Tumours: An Update
O'Toole D, Kianmanesh R, Caplin M.

4. ENETS 2016 Consensus Guidelines Update for the Management of Functional p-NETs (F-p-NETs) and Non-Functional p-NETs (NF-p-NETs)
Falconi M, Eriksson B, Kaltsas G, Bartsch DK, Capdevila J, Caplin M, Kos-Kudla B, Kwekkeboom D, Rindi G, Klöppel G, Reed N, Kianmanesh R, Jensen RT; all other Vienna Consensus Conference participants.

5. ENETS 2016 Consensus Guidelines for High Grade Gastro-Entero-Pancreatic (GEP) Neuroendocrine Tumours and Neuroendocrine Carcinomas (NEC)
Garcia-Carbonero R, Sorbye H, Baudin E, Raymond E, Wiedenmann B, Niederle B, Sedlackova E, Toumpanakis C, Anlauf M, Cwikla J, Caplin M, O'Toole D, Perren A; all other Vienna Consensus Conference participants.

6. ENETS 2016 Consensus Guidelines Update for the Management of Distant Metastatic Disease of Intestinal, Pancreatic, Bronchial Neuroendocrine Neoplasms (NEN) and NEN of Unknown Primary Site
Pavel M, O'Toole D, Costa F, Capdevila J, Gross D, Kianmanesh R, Krenning E, Knigge U, Salazar R, Pape UF, Öberg K; all other Vienna Consensus Conference participants.

7. ENETS 2016 Consensus Guidelines Update for Colorectal Neuroendocrine Neoplasms (NEN)
Ramage J, De Herder WW, Delle Fave GF, Ferolla P, Ferone D, Ito T, Ruszniewski P, Sundin A, Weber W, Zheng-Pei Z, Taal B, Pascher A; all other Vienna Consensus Conference participants.

8. ENETS 2016 Consensus Guidelines for Neuroendocrine Neoplasms of the Appendix (Excluding Goblet Cell Carcinomas)
Pape UF, Niederle B, Costa F, Gross D, Kelestimur F, Kianmanesh R, Knigge U, Öberg K, Pavel M, Perren A, Toumpanakis C, O'Connor J, Krenning E, Reed N, O'Toole D; all other Vienna Consensus Conference participants.

ENETS Standards of Care from 2017

ENETS 2017 Consensus Guidelines for the Diagnosis and Treatment of Neuroendocrine Tumors

1. Introduction - ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Tumors
Pavel M, De Herder WW

2. ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Tumors: Pathology – Diagnosis and Prognostic Stratification
Perren A, Couvelard A, Scoazec J-Y, Costa F, Borbath I, Delle Fave G, Gorbounova V, Gross D, Grossman A, Jensen RT, Kulke M, Oberg K, Rindi G, Sorbye H, Welin S; all other Antibes Consensus Conference participants.

3. ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Tumors: Biochemical Markers
Oberg K, Couvelard A, Delle Fave G, Gross D, Grossman A, Jensen RT, Pape U-F, Perren A, Rindi G, Ruszniewski P, Scoazec J-Y, Welin S, Wiedenmann B, Ferone D; all other Antibes Consensus Conference participants.

4. ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Tumors: Radiological, Nuclear Medicine and Hybrid Imaging
Sundin A, Arnold R, Baudin E, Cwikla JB, Eriksson B, Fanti S, Fazio N, Giammarile F, Hicks RJ, Kjaer A, Krenning E, Kwekkeboom D, Lombard-Bohas C, O’Connor JM, O’Toole D, Rockall A, Wiedenmann B, Valle JW, Vullierme M-P; all other Antibes Consensus Conference participants.

5. ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Tumors: Pre- and Perioperative Therapy in Patients with Neuroendocrine Tumors
Kaltsas G, Caplin M, Davies P, Ferone D, Garcia-Carbonero R, Grozinsky-Glasberg S, Hörsch D, Tiensuu Janson E, Kianmanesh R, Kos-Kudla B, Pavel M, Rinke A, Falconi M, De Herder WW; all other Antibes Consensus Conference participants.

6. ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Tumours: Surgery for Small Intestinal and Pancreatic Neuroendocrine Tumours
Partelli S, Bartsch DK, Capdevila J, Chen J, Knigge U, Niederle B, Nieveen van Dijkum EJM, Pape U-F, Pascher A, Ramage JK, Reed N, Ruszniewski P, Scoazec J-Y, Toumpanakis C, Kianmanesh R, Falconi M; all other Antibes Consensus Conference participants.

7. ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Neoplasms: Systemic Therapy – Biotherapy and Novel Targeted Agents
Pavel M, Valle JW, Eriksson B, Rinke A, Caplin M, Chen J, Costa F, Falkerby J, Fazio N, Gorbounova V, De Herder WW, Kulke M, Lombard-Bohas C, O’Connor JM, Sorbye H, Garcia-Carbonero R; all other Antibes Consensus Conference participants.

8. ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Neoplasms: Systemic Therapy – Chemotherapy
Garcia-Carbonero R, Rinke A, Valle JW, Fazio N, Caplin M, Gorbounova V, O’Connor JM, Eriksson B, Sorbye H, Kulke M, Chen J, Falkerby J, Costa F, De Herder WW, Lombard-Bohas C, Pavel M; all other Antibes Consensus Conference participants.

9. ENETS 2017 Consensus Guidelines for the Standards of Care in Neuroendocrine Neoplasms: Peptide Receptor Radionuclide Therapy with Radiolabelled Somatostatin Analogues
Hicks RJ, Kwekkeboom DJ, Krenning E, Bodei L, Grozinsky-Glasberg S, Arnold R, Borbath I, Cwikla JB, Toumpanakis C, Kaltsas G, Davies P, Hörsch D, Tiensuu Janson E, Ramage JK; all other Antibes Consensus Conference participants.

10. ENETS 2017 Consensus Recommendations for the Standards of Care in Neuroendocrine Neoplasms: Follow-Up and Documentation
Knigge U, Capdevila J, Bartsch DK, Baudin E, Falkerby J, Kianmanesh R, Kos-Kudla B, Niederle B, Nieveen van Dijkum EJM, O’Toole D, Pascher A, Reed N, Sundin A, Vullierme M-P; all other Antibes Consensus Conference participants.