Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol

S. C. Clement; W. E. Visser; C. A. Lebbink; D. Albano; H. L. Claahsen-Van der Grinten; A. Czarniecka; R. P. Dias; M. P. Dierselhuis; I. Dzivite-Krisane; R. Elisei; A. Garcia-Burillo; L. Izatt; C. Kanaka-Gantenbein; H. Krude; L. Lamartina; K. Lorenz; M. Luster; R. Navardauskaitė; M. Negre Busó; K. Newbold; R. P. Peeters; G. Pellegriti; A. Piccardo; A. L. Priego; A. Redlich; L. de Sanctis; M. Sobrinho-Simões; A. S.P. van Trotsenburg; F. A. Verburg; M. Vriens; T. P. Links; S. F. Ahmed; H. M. van Santen

doi:10.1530/EC-22-0306

Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol

S. C. Clement
, W. E. Visser
, C. A. Lebbink
, D. Albano
, H. L. Claahsen-Van der Grinten
, A. Czarniecka
, R. P. Dias
, M. P. Dierselhuis
, I. Dzivite-Krisane
, R. Elisei
, A. Garcia-Burillo
, L. Izatt
, C. Kanaka-Gantenbein
, H. Krude
, L. Lamartina
, K. Lorenz
, M. Luster
, R. Navardauskaitė
, M. Negre Busó
, K. Newbold

R. P. Peeters, G. Pellegriti, A. Piccardo, A. L. Priego, A. Redlich, L. de Sanctis, M. Sobrinho-Simões, A. S.P. van Trotsenburg, F. A. Verburg, M. Vriens, T. P. Links, S. F. Ahmed, H. M. van Santen^*

^*Corresponding author for this work

University of Amsterdam
Utrecht University
Princess Máxima Center for Pediatric Oncology
University of Brescia
Radboud University Medical Center
Maria Sklodowska-Curie Memorial Cancer Centre and Institute of Oncology
Birmingham Women's and Children's Hospital
University of Birmingham, College of Medical and Dental Sciences
Children's Clinical University Hospital
University of Pisa
Hospital Vall d'Hebron & ARADyAL research network
Guy's and St Thomas' NHS Foundation Trust
National and Kapodistrian University of Athens
Charité – Universitätsmedizin Berlin
Institut Gustave Roussy
Martin Luther University Halle-Wittenberg
University Hospital Marburg
Lithuanian University of Health Sciences
University of Girona
The Institute of Cancer Research and Royal Marsden NHS Foundation Trust
Endocrinology
E.O. Ospedali Galliera
Leiden University Medical Centre
Otto von Guericke University Magdeburg
University of Turin
Centro Hospitalar Universitário de São João
University Medical Centre Groningen
University Medical Centre Utrecht
Garibaldi-Nesima Medical Center
University of Glasgow

Research output: Contribution to journal › Article › Academic › peer-review

5 Citations (Scopus)

61 Downloads (Pure)

Abstract

Background: Although differentiated thyroid carcinoma (DTC) is the most frequent endocrine pediatric cancer, it is rare in childhood and adolescence. While tumor persistence and recurrence are not uncommon, mortality remains extremely low. Complications of treatment are however reported in up to 48% of the survivors. Due to the rarity of the disease, current treatment guidelines are predominantly based on the results of small observational retrospective studies and extrapolations from results in adult patients. In order to develop more personalized treatment and follow-up strategies (aiming to reduce complication rates), there is an unmet need for uniform international prospective data collection and clinical trials. Methods and analysis: The European pediatric thyroid carcinoma registry aims to collect clinical data for all patients ≤18 years of age with a confirmed diagnosis of DTC who have been diagnosed, assessed, or treated at a participating site. This registry will be a component of the wider European Registries for Rare Endocrine Conditions project which has close links to Endo-ERN, the European Reference Network for Rare Endocrine Conditions. A multidisciplinary expert working group was formed to develop a minimal dataset comprising information regarding demographic data, diagnosis, treatment, and outcome. We constructed an umbrella-type registry, with a detailed basic dataset. In the future, this may provide the opportunity for research teams to integrate clinical research questions. Ethics and dissemination: Written informed consent will be obtained from all participants and/or their parents/guardians. Summaries and descriptive analyses of the registry will be disseminated via conference presentations and peer-reviewed publications.

Original language	English
Article number	e220306
Journal	Endocrine Connections
Volume	12
Issue number	3
DOIs	https://doi.org/10.1530/EC-22-0306
Publication status	Published - 2023

Bibliographical note

Funding Information:
The ped-DTC registry will be established and managed by the EuRRECa (https://eurreca.net/) which was launched in February 2018 and funded by the EU Health Programme with additional support from the European Society for Pediatric Endocrinology and the European Society of Endocrinology. The EuRRECa project was initially developed to support the European Reference Network for Rare Endocrine Conditions (Endo-ERN) but is open to use by the wider endocrine community. Endo-ERN is the largest ERN with 111 reference centers from 28 member states that are estimated to care for over 60,000 patients (https://endo-ern.eu/about/reference-centre). Endo-ERN includes 36 groups of conditions with orphacodes that are organized into eight ‘main thematic groups’. It aims to maximize the opportunity for patients, healthcare professionals, and researchers to participate and use high‐quality, patient-centered registries for rare endocrine conditions that are covered within Endo‐ERN. The EuRRECa project offers two platforms for patients’ registration. The electronic reporting system (e-REC) provides a better understanding of the occurrence of the conditions covered by Endo-ERN. To date, 31 participating centers have reported over 1850 cases of non-metastatic thyroid carcinoma; of these, 64 cases were pediatric patients.

Funding Information:
SFA and ALP are supported by the European Union’s Health Programme (2014–2020) on the EuRRECa project ‘777215/EuRRECa’ and the EuRR-Bone project ‘946831/EuRR-Bone’. The EuRRECa project is also grateful to the European Society of Endocrinology and the European Society for Paediatric Endocrinology for funding support.

Publisher Copyright:
© 2023 The authors Published by Bioscientifica Ltd.

UN SDGs

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SDG 3 Good Health and Well-being

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Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa projectFinal published version, 1.7 MBLicence: CC BY-NC-ND

Cite this

Clement, S. C., Visser, W. E., Lebbink, C. A., Albano, D., Claahsen-Van der Grinten, H. L., Czarniecka, A., Dias, R. P., Dierselhuis, M. P., Dzivite-Krisane, I., Elisei, R., Garcia-Burillo, A., Izatt, L., Kanaka-Gantenbein, C., Krude, H., Lamartina, L., Lorenz, K., Luster, M., Navardauskaitė, R., Negre Busó, M., ... van Santen, H. M. (2023). Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol. Endocrine Connections, 12(3), Article e220306. https://doi.org/10.1530/EC-22-0306

@article{9121f04996694e548efc59bb242746f5,

title = "Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol",

abstract = "Background: Although differentiated thyroid carcinoma (DTC) is the most frequent endocrine pediatric cancer, it is rare in childhood and adolescence. While tumor persistence and recurrence are not uncommon, mortality remains extremely low. Complications of treatment are however reported in up to 48\% of the survivors. Due to the rarity of the disease, current treatment guidelines are predominantly based on the results of small observational retrospective studies and extrapolations from results in adult patients. In order to develop more personalized treatment and follow-up strategies (aiming to reduce complication rates), there is an unmet need for uniform international prospective data collection and clinical trials. Methods and analysis: The European pediatric thyroid carcinoma registry aims to collect clinical data for all patients ≤18 years of age with a confirmed diagnosis of DTC who have been diagnosed, assessed, or treated at a participating site. This registry will be a component of the wider European Registries for Rare Endocrine Conditions project which has close links to Endo-ERN, the European Reference Network for Rare Endocrine Conditions. A multidisciplinary expert working group was formed to develop a minimal dataset comprising information regarding demographic data, diagnosis, treatment, and outcome. We constructed an umbrella-type registry, with a detailed basic dataset. In the future, this may provide the opportunity for research teams to integrate clinical research questions. Ethics and dissemination: Written informed consent will be obtained from all participants and/or their parents/guardians. Summaries and descriptive analyses of the registry will be disseminated via conference presentations and peer-reviewed publications.",

author = "Clement, \{S. C.\} and Visser, \{W. E.\} and Lebbink, \{C. A.\} and D. Albano and \{Claahsen-Van der Grinten\}, \{H. L.\} and A. Czarniecka and Dias, \{R. P.\} and Dierselhuis, \{M. P.\} and I. Dzivite-Krisane and R. Elisei and A. Garcia-Burillo and L. Izatt and C. Kanaka-Gantenbein and H. Krude and L. Lamartina and K. Lorenz and M. Luster and R. Navardauskaitė and \{Negre Bus{\'o}\}, M. and K. Newbold and Peeters, \{R. P.\} and G. Pellegriti and A. Piccardo and Priego, \{A. L.\} and A. Redlich and \{de Sanctis\}, L. and M. Sobrinho-Sim{\~o}es and \{van Trotsenburg\}, \{A. S.P.\} and Verburg, \{F. A.\} and M. Vriens and Links, \{T. P.\} and Ahmed, \{S. F.\} and \{van Santen\}, \{H. M.\}",

note = "Funding Information: The ped-DTC registry will be established and managed by the EuRRECa (https://eurreca.net/) which was launched in February 2018 and funded by the EU Health Programme with additional support from the European Society for Pediatric Endocrinology and the European Society of Endocrinology. The EuRRECa project was initially developed to support the European Reference Network for Rare Endocrine Conditions (Endo-ERN) but is open to use by the wider endocrine community. Endo-ERN is the largest ERN with 111 reference centers from 28 member states that are estimated to care for over 60,000 patients (https://endo-ern.eu/about/reference-centre). Endo-ERN includes 36 groups of conditions with orphacodes that are organized into eight {\textquoteleft}main thematic groups{\textquoteright}. It aims to maximize the opportunity for patients, healthcare professionals, and researchers to participate and use high‐quality, patient-centered registries for rare endocrine conditions that are covered within Endo‐ERN. The EuRRECa project offers two platforms for patients{\textquoteright} registration. The electronic reporting system (e-REC) provides a better understanding of the occurrence of the conditions covered by Endo-ERN. To date, 31 participating centers have reported over 1850 cases of non-metastatic thyroid carcinoma; of these, 64 cases were pediatric patients. Funding Information: SFA and ALP are supported by the European Union{\textquoteright}s Health Programme (2014–2020) on the EuRRECa project {\textquoteleft}777215/EuRRECa{\textquoteright} and the EuRR-Bone project {\textquoteleft}946831/EuRR-Bone{\textquoteright}. The EuRRECa project is also grateful to the European Society of Endocrinology and the European Society for Paediatric Endocrinology for funding support. Publisher Copyright: {\textcopyright} 2023 The authors Published by Bioscientifica Ltd.",

year = "2023",

doi = "10.1530/EC-22-0306",

language = "English",

volume = "12",

journal = "Endocrine Connections",

issn = "2049-3614",

publisher = "Bioscientifica Ltd",

number = "3",

}

Clement, SC, Visser, WE, Lebbink, CA, Albano, D, Claahsen-Van der Grinten, HL, Czarniecka, A, Dias, RP, Dierselhuis, MP, Dzivite-Krisane, I, Elisei, R, Garcia-Burillo, A, Izatt, L, Kanaka-Gantenbein, C, Krude, H, Lamartina, L, Lorenz, K, Luster, M, Navardauskaitė, R, Negre Busó, M, Newbold, K, Peeters, RP, Pellegriti, G, Piccardo, A, Priego, AL, Redlich, A, de Sanctis, L, Sobrinho-Simões, M, van Trotsenburg, ASP, Verburg, FA, Vriens, M, Links, TP, Ahmed, SF & van Santen, HM 2023, 'Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol', Endocrine Connections, vol. 12, no. 3, e220306. https://doi.org/10.1530/EC-22-0306

TY - JOUR

T1 - Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project

T2 - rationale and protocol

AU - Clement, S. C.

AU - Visser, W. E.

AU - Lebbink, C. A.

AU - Albano, D.

AU - Claahsen-Van der Grinten, H. L.

AU - Czarniecka, A.

AU - Dias, R. P.

AU - Dierselhuis, M. P.

AU - Dzivite-Krisane, I.

AU - Elisei, R.

AU - Garcia-Burillo, A.

AU - Izatt, L.

AU - Kanaka-Gantenbein, C.

AU - Krude, H.

AU - Lamartina, L.

AU - Lorenz, K.

AU - Luster, M.

AU - Navardauskaitė, R.

AU - Negre Busó, M.

AU - Newbold, K.

AU - Peeters, R. P.

AU - Pellegriti, G.

AU - Piccardo, A.

AU - Priego, A. L.

AU - Redlich, A.

AU - de Sanctis, L.

AU - Sobrinho-Simões, M.

AU - van Trotsenburg, A. S.P.

AU - Verburg, F. A.

AU - Vriens, M.

AU - Links, T. P.

AU - Ahmed, S. F.

AU - van Santen, H. M.

N1 - Funding Information: The ped-DTC registry will be established and managed by the EuRRECa (https://eurreca.net/) which was launched in February 2018 and funded by the EU Health Programme with additional support from the European Society for Pediatric Endocrinology and the European Society of Endocrinology. The EuRRECa project was initially developed to support the European Reference Network for Rare Endocrine Conditions (Endo-ERN) but is open to use by the wider endocrine community. Endo-ERN is the largest ERN with 111 reference centers from 28 member states that are estimated to care for over 60,000 patients (https://endo-ern.eu/about/reference-centre). Endo-ERN includes 36 groups of conditions with orphacodes that are organized into eight ‘main thematic groups’. It aims to maximize the opportunity for patients, healthcare professionals, and researchers to participate and use high‐quality, patient-centered registries for rare endocrine conditions that are covered within Endo‐ERN. The EuRRECa project offers two platforms for patients’ registration. The electronic reporting system (e-REC) provides a better understanding of the occurrence of the conditions covered by Endo-ERN. To date, 31 participating centers have reported over 1850 cases of non-metastatic thyroid carcinoma; of these, 64 cases were pediatric patients. Funding Information: SFA and ALP are supported by the European Union’s Health Programme (2014–2020) on the EuRRECa project ‘777215/EuRRECa’ and the EuRR-Bone project ‘946831/EuRR-Bone’. The EuRRECa project is also grateful to the European Society of Endocrinology and the European Society for Paediatric Endocrinology for funding support. Publisher Copyright: © 2023 The authors Published by Bioscientifica Ltd.

PY - 2023

Y1 - 2023

N2 - Background: Although differentiated thyroid carcinoma (DTC) is the most frequent endocrine pediatric cancer, it is rare in childhood and adolescence. While tumor persistence and recurrence are not uncommon, mortality remains extremely low. Complications of treatment are however reported in up to 48% of the survivors. Due to the rarity of the disease, current treatment guidelines are predominantly based on the results of small observational retrospective studies and extrapolations from results in adult patients. In order to develop more personalized treatment and follow-up strategies (aiming to reduce complication rates), there is an unmet need for uniform international prospective data collection and clinical trials. Methods and analysis: The European pediatric thyroid carcinoma registry aims to collect clinical data for all patients ≤18 years of age with a confirmed diagnosis of DTC who have been diagnosed, assessed, or treated at a participating site. This registry will be a component of the wider European Registries for Rare Endocrine Conditions project which has close links to Endo-ERN, the European Reference Network for Rare Endocrine Conditions. A multidisciplinary expert working group was formed to develop a minimal dataset comprising information regarding demographic data, diagnosis, treatment, and outcome. We constructed an umbrella-type registry, with a detailed basic dataset. In the future, this may provide the opportunity for research teams to integrate clinical research questions. Ethics and dissemination: Written informed consent will be obtained from all participants and/or their parents/guardians. Summaries and descriptive analyses of the registry will be disseminated via conference presentations and peer-reviewed publications.

AB - Background: Although differentiated thyroid carcinoma (DTC) is the most frequent endocrine pediatric cancer, it is rare in childhood and adolescence. While tumor persistence and recurrence are not uncommon, mortality remains extremely low. Complications of treatment are however reported in up to 48% of the survivors. Due to the rarity of the disease, current treatment guidelines are predominantly based on the results of small observational retrospective studies and extrapolations from results in adult patients. In order to develop more personalized treatment and follow-up strategies (aiming to reduce complication rates), there is an unmet need for uniform international prospective data collection and clinical trials. Methods and analysis: The European pediatric thyroid carcinoma registry aims to collect clinical data for all patients ≤18 years of age with a confirmed diagnosis of DTC who have been diagnosed, assessed, or treated at a participating site. This registry will be a component of the wider European Registries for Rare Endocrine Conditions project which has close links to Endo-ERN, the European Reference Network for Rare Endocrine Conditions. A multidisciplinary expert working group was formed to develop a minimal dataset comprising information regarding demographic data, diagnosis, treatment, and outcome. We constructed an umbrella-type registry, with a detailed basic dataset. In the future, this may provide the opportunity for research teams to integrate clinical research questions. Ethics and dissemination: Written informed consent will be obtained from all participants and/or their parents/guardians. Summaries and descriptive analyses of the registry will be disseminated via conference presentations and peer-reviewed publications.

UR - https://www.scopus.com/pages/publications/85148519837

U2 - 10.1530/EC-22-0306

DO - 10.1530/EC-22-0306

M3 - Article

C2 - 37931414

AN - SCOPUS:85148519837

SN - 2049-3614

VL - 12

JO - Endocrine Connections

JF - Endocrine Connections

IS - 3

M1 - e220306

ER -

Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol

Abstract

Bibliographical note

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