International consensus statement on the diagnosis and management of phaeochromocytoma and paraganglioma in children and adolescents

Ruth T. Casey; Emile Hendriks; Cheri Deal; Steven G. Waguespack; Verena Wiegering; Antje Redlich; Scott Akker; Rathi Prasad; Martin Fassnacht; Roderick Clifton-Bligh; Laurence Amar; Stefan Bornstein; Letizia Canu; Evangelia Charmandari; Alexandra Chrisoulidou; Maria Currás Freixes; Ronald de Krijger; Luisa de Sanctis; Antonio Fojo; Amol J. Ghia; Angela Huebner; Vasilis Kosmoliaptsis; Michaela Kuehlen; Marco Raffaelli; Charlotte Lussey-Lepoutre; Stephen D. Marks; Naris Nilubol; Mirko Parasiliti-Caprino; Henri H.J.L.M. Timmers; Anna Lena Zietlow; Mercedes Robledo; Anne Paule Gimenez-Roqueplo; Ashley B. Grossman; David Taïeb; Eamonn R. Maher; Jacques W.M. Lenders; Graeme Eisenhofer; Camilo Jimenez; Karel Pacak; Christina Pamporaki

doi:10.1038/s41574-024-01024-5

International consensus statement on the diagnosis and management of phaeochromocytoma and paraganglioma in children and adolescents

Ruth T. Casey^*
, Emile Hendriks
, Cheri Deal
, Steven G. Waguespack
, Verena Wiegering
, Antje Redlich
, Scott Akker
, Rathi Prasad
, Martin Fassnacht
, Roderick Clifton-Bligh
, Laurence Amar
, Stefan Bornstein
, Letizia Canu
, Evangelia Charmandari
, Alexandra Chrisoulidou
, Maria Currás Freixes
, Ronald de Krijger
, Luisa de Sanctis
, Antonio Fojo
, Amol J. Ghia

Angela Huebner, Vasilis Kosmoliaptsis, Michaela Kuehlen, Marco Raffaelli, Charlotte Lussey-Lepoutre, Stephen D. Marks, Naris Nilubol, Mirko Parasiliti-Caprino, Henri H.J.L.M. Timmers, Anna Lena Zietlow, Mercedes Robledo, Anne Paule Gimenez-Roqueplo, Ashley B. Grossman, David Taïeb, Eamonn R. Maher, Jacques W.M. Lenders, Graeme Eisenhofer, Camilo Jimenez, Karel Pacak, Christina Pamporaki^*

^*Corresponding author for this work

Aston Medical School

University of Cambridge and NIHR Cambridge Biomedical Research Centre
Cambridge University Hospitals NHS Foundation Trust
University of Montreal
University of Texas M.D. Anderson Cancer Center
Julius-Maximilians-Universität Würzburg
Magdeburg University
St. Bartholomew's Hospital
Queen Mary University of London
University Hospital Würzburg
Royal North Shore Hospital
Université de Paris
Assistance Publique-Hôpitaux de Paris
University Hospital Carl Gustav Carus
Università degli Studi di Firenze
Azienda Ospedaliera Universitaria (AOU) Careggi
University of Athens
Theagenio Hospital
Centro de Investigación Biomédica en Red de Enfermedades Raras
Princess Maxima Center for Pediatric Oncology
Royal Netherlands Academy of Arts and Sciences and University Medical Center Utrecht
Università degli Studi di Torino
Columbia University Medical Center
Department of Surgery
University of Cambridge
University of Augsburg
Università Cattolica del Sacro Cuore
Università Cattolica del Sacro Cuore
LENA CNRS UPR640 Hopital de la Salpetriere
University College London
National Cancer Institute
University of Turin
Radboud University Medical Center
University of Technology Dresden
Paris Cardiovascular Research Center (PARCC)
Faculte de Medecine
Oxford University
Royal Free Hospital
University Hospital La Timone
National Institute of Child Health and Development

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Abstract

Phaeochromocytomas and paragangliomas (PPGL) are rare neuroendocrine tumours that arise not only in adulthood but also in childhood and adolescence. Up to 70–80% of childhood PPGL are hereditary, accounting for a higher incidence of metastatic and/or multifocal PPGL in paediatric patients than in adult patients. Key differences in the tumour biology and management, together with rare disease incidence and therapeutic challenges in paediatric compared with adult patients, mandate close expert cross-disciplinary teamwork. Teams should ideally include adult and paediatric endocrinologists, oncologists, cardiologists, surgeons, geneticists, pathologists, radiologists, clinical psychologists and nuclear medicine physicians. Provision of an international Consensus Statement should improve care and outcomes for children and adolescents with these tumours.

Original language	English
Pages (from-to)	729-748
Number of pages	20
Journal	Nature Reviews Endocrinology
Volume	20
Issue number	12
Early online date	15 Aug 2024
DOIs	https://doi.org/10.1038/s41574-024-01024-5
Publication status	Published - Dec 2024

Bibliographical note

Copyright © Crown 2024, corrected publication 2024. This is an accepted manuscript of an article published in Nature Reviews Endocrinology. The published version is available at: https://doi.org/10.1038/s41574-024-01024-5

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

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10.1038/s41574-024-01024-5

AAM_ConS_Pamporaki_v3_clean_RC_CP_15_07
Copyright © Crown 2024, corrected publication 2024. This is an accepted manuscript of an article published in Nature Reviews Endocrinology. The published version is available at: https://doi.org/10.1038/s41574-024-01024-5
Accepted author manuscript, 697 KB

https://www.repository.cam.ac.uk/items/11032539-9492-4f1a-afc2-f60640c3fe7eLicence: CC BY 4.0

Cite this

Casey, R. T., Hendriks, E., Deal, C., Waguespack, S. G., Wiegering, V., Redlich, A., Akker, S., Prasad, R., Fassnacht, M., Clifton-Bligh, R., Amar, L., Bornstein, S., Canu, L., Charmandari, E., Chrisoulidou, A., Freixes, M. C., de Krijger, R., de Sanctis, L., Fojo, A., ... Pamporaki, C. (2024). International consensus statement on the diagnosis and management of phaeochromocytoma and paraganglioma in children and adolescents. Nature Reviews Endocrinology, 20(12), 729-748. https://doi.org/10.1038/s41574-024-01024-5

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title = "International consensus statement on the diagnosis and management of phaeochromocytoma and paraganglioma in children and adolescents",

abstract = "Phaeochromocytomas and paragangliomas (PPGL) are rare neuroendocrine tumours that arise not only in adulthood but also in childhood and adolescence. Up to 70–80\% of childhood PPGL are hereditary, accounting for a higher incidence of metastatic and/or multifocal PPGL in paediatric patients than in adult patients. Key differences in the tumour biology and management, together with rare disease incidence and therapeutic challenges in paediatric compared with adult patients, mandate close expert cross-disciplinary teamwork. Teams should ideally include adult and paediatric endocrinologists, oncologists, cardiologists, surgeons, geneticists, pathologists, radiologists, clinical psychologists and nuclear medicine physicians. Provision of an international Consensus Statement should improve care and outcomes for children and adolescents with these tumours.",

author = "Casey, \{Ruth T.\} and Emile Hendriks and Cheri Deal and Waguespack, \{Steven G.\} and Verena Wiegering and Antje Redlich and Scott Akker and Rathi Prasad and Martin Fassnacht and Roderick Clifton-Bligh and Laurence Amar and Stefan Bornstein and Letizia Canu and Evangelia Charmandari and Alexandra Chrisoulidou and Freixes, \{Maria Curr{\'a}s\} and \{de Krijger\}, Ronald and \{de Sanctis\}, Luisa and Antonio Fojo and Ghia, \{Amol J.\} and Angela Huebner and Vasilis Kosmoliaptsis and Michaela Kuehlen and Marco Raffaelli and Charlotte Lussey-Lepoutre and Marks, \{Stephen D.\} and Naris Nilubol and Mirko Parasiliti-Caprino and Timmers, \{Henri H.J.L.M.\} and Zietlow, \{Anna Lena\} and Mercedes Robledo and Gimenez-Roqueplo, \{Anne Paule\} and Grossman, \{Ashley B.\} and David Ta{\"i}eb and Maher, \{Eamonn R.\} and Lenders, \{Jacques W.M.\} and Graeme Eisenhofer and Camilo Jimenez and Karel Pacak and Christina Pamporaki",

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Casey, RT, Hendriks, E, Deal, C, Waguespack, SG, Wiegering, V, Redlich, A, Akker, S, Prasad, R, Fassnacht, M, Clifton-Bligh, R, Amar, L, Bornstein, S, Canu, L, Charmandari, E, Chrisoulidou, A, Freixes, MC, de Krijger, R, de Sanctis, L, Fojo, A, Ghia, AJ, Huebner, A, Kosmoliaptsis, V, Kuehlen, M, Raffaelli, M, Lussey-Lepoutre, C, Marks, SD, Nilubol, N, Parasiliti-Caprino, M, Timmers, HHJLM, Zietlow, AL, Robledo, M, Gimenez-Roqueplo, AP, Grossman, AB, Taïeb, D, Maher, ER, Lenders, JWM, Eisenhofer, G, Jimenez, C, Pacak, K & Pamporaki, C 2024, 'International consensus statement on the diagnosis and management of phaeochromocytoma and paraganglioma in children and adolescents', Nature Reviews Endocrinology, vol. 20, no. 12, pp. 729-748. https://doi.org/10.1038/s41574-024-01024-5

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AU - Hendriks, Emile

AU - Deal, Cheri

AU - Waguespack, Steven G.

AU - Wiegering, Verena

AU - Redlich, Antje

AU - Akker, Scott

AU - Prasad, Rathi

AU - Fassnacht, Martin

AU - Clifton-Bligh, Roderick

AU - Amar, Laurence

AU - Bornstein, Stefan

AU - Canu, Letizia

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AU - Kosmoliaptsis, Vasilis

AU - Kuehlen, Michaela

AU - Raffaelli, Marco

AU - Lussey-Lepoutre, Charlotte

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AU - Nilubol, Naris

AU - Parasiliti-Caprino, Mirko

AU - Timmers, Henri H.J.L.M.

AU - Zietlow, Anna Lena

AU - Robledo, Mercedes

AU - Gimenez-Roqueplo, Anne Paule

AU - Grossman, Ashley B.

AU - Taïeb, David

AU - Maher, Eamonn R.

AU - Lenders, Jacques W.M.

AU - Eisenhofer, Graeme

AU - Jimenez, Camilo

AU - Pacak, Karel

AU - Pamporaki, Christina

N1 - Copyright © Crown 2024, corrected publication 2024. This is an accepted manuscript of an article published in Nature Reviews Endocrinology. The published version is available at: https://doi.org/10.1038/s41574-024-01024-5

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N2 - Phaeochromocytomas and paragangliomas (PPGL) are rare neuroendocrine tumours that arise not only in adulthood but also in childhood and adolescence. Up to 70–80% of childhood PPGL are hereditary, accounting for a higher incidence of metastatic and/or multifocal PPGL in paediatric patients than in adult patients. Key differences in the tumour biology and management, together with rare disease incidence and therapeutic challenges in paediatric compared with adult patients, mandate close expert cross-disciplinary teamwork. Teams should ideally include adult and paediatric endocrinologists, oncologists, cardiologists, surgeons, geneticists, pathologists, radiologists, clinical psychologists and nuclear medicine physicians. Provision of an international Consensus Statement should improve care and outcomes for children and adolescents with these tumours.

AB - Phaeochromocytomas and paragangliomas (PPGL) are rare neuroendocrine tumours that arise not only in adulthood but also in childhood and adolescence. Up to 70–80% of childhood PPGL are hereditary, accounting for a higher incidence of metastatic and/or multifocal PPGL in paediatric patients than in adult patients. Key differences in the tumour biology and management, together with rare disease incidence and therapeutic challenges in paediatric compared with adult patients, mandate close expert cross-disciplinary teamwork. Teams should ideally include adult and paediatric endocrinologists, oncologists, cardiologists, surgeons, geneticists, pathologists, radiologists, clinical psychologists and nuclear medicine physicians. Provision of an international Consensus Statement should improve care and outcomes for children and adolescents with these tumours.

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ER -

International consensus statement on the diagnosis and management of phaeochromocytoma and paraganglioma in children and adolescents

Abstract

Bibliographical note

UN SDGs

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