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

S C Clement^{1

2}, W E Visser³, C A Lebbink^{2

4}, D Albano⁵, H L Claahsen-van der Grinten⁶, A Czarniecka⁷, R P Dias^{8

9}, M P Dierselhuis⁴, I Dzivite-Krisane¹⁰, R Elisei¹¹, A Garcia-Burillo¹², L Izatt¹³, C Kanaka-Gantenbein¹⁴, H Krude¹⁵, L Lamartina¹⁶, K Lorenz¹⁷, M Luster¹⁸, R Navardauskaitė¹⁹, M Negre Busó²⁰, K Newbold²¹, R P Peeters³, G Pellegriti²², A Piccardo²³, A L Priego²⁴, A Redlich²⁵, L de Sanctis²⁶, M Sobrinho-Simões²⁷, A S P van Trotsenburg²⁸, F A Verburg²⁹, M Vriens³⁰, T P Links³¹, S F Ahmed^{22

32

33}, H M van Santen^{2

4}

Affiliations

¹ Department of Pediatrics, Emma Children's Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
² Department of Pediatric Endocrinology, Wilhelmina Children's Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands.
³ Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands.
⁴ Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands.
⁵ Department of Nuclear Medicine, University of Brescia and Spedali Civili of Brescia, Brescia, Italy.
⁶ Department of Pediatrics, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands.
⁷ The Oncologic and Reconstructive Surgery Clinic, M. Sklodowska-Curie National Research Institute of Oncology Gliwice Branch, Gliwice, Poland.
⁸ Department of Endocrinology and Diabetes, Birmingham Children's Hospital, Birmingham Women's, and Children's NHS Foundation Trust, Birmingham, UK.
⁹ Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
¹⁰ Department of Pediatric Endocrinology, Children's Clinical University Hospital, Riga, Latvia.
¹¹ Endocrine Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.
¹² Nuclear Medicine Department, Vall d'Hebron University Hospital, Barcelona, Spain.
¹³ Department of Clinical Genetics, Guy's and St Thomas' NHS Foundation Trust, London, UK.
¹⁴ Division of Endocrinology, Diabetes, and Metabolism, First Department of Pediatrics National and Kapodistrian University of Athens Medical School, Aghia Sophia Children's Hospital, Athens, Greece.
¹⁵ Institute of Experimental Pediatric Endocrinology, Charité - Universitätsmedizin, Berlin, Germany.
¹⁶ Department of Endocrine Oncology, Gustave Roussy, Villejuif, France.
¹⁷ Department of Visceral, Vascular and Endocrine Surgery, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
¹⁸ Department of Nuclear Medicine, University Hospital Marburg, Marburg, Germany.
¹⁹ Department of Endocrinology, Lithuanian University of Health Sciences, Kaunas, Lithuania.
²⁰ Nuclear Medicine Service - Institut de diagnòstic per la Imatge, Hospital Universitari de Girona Dr. Josep Trueta, Girona, Spain.
²¹ Thyroid Therapy Unit, The Royal Marsden NHS Foundation Trust Hospital, London, UK.
²² Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy.
²³ Department of Nuclear Medicine, EO Ospedali Galliera, Genoa, Italy.
²⁴ Department of Medicine, Division of Endocrinology, Leiden, University medical Center, Leiden, The Netherlands.
²⁵ Pediatric Oncology Department, Otto von Guericke University Children's Hospital, Magdeburg, Germany.
²⁶ Regina Margherita Children Hospital - Department of Public Health and Pediatric Sciences, University of Torino, Torino, Italy.
²⁷ University Hospital of São João, Medical Faculty and Institute of Molecular Pathology and Immunology, University of Porto, Porto, Portugal.
²⁸ Department of Pediatric Endocrinology, Emma Children's Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
²⁹ Department of Radiology & Nuclear Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands.
³⁰ Department of Endocrine Surgery, University Medical Center Utrecht, Utrecht, The Netherlands.
³¹ Department of Endocrinology, University Medical Center Groningen, Groningen, The Netherlands.
³² Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK.
³³ Office for Rare Conditions, University of Glasgow, Glasgow, UK.

PMID: 37931414
PMCID: PMC9986407
DOI: 10.1530/EC-22-0306

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

S C Clement et al. Endocr Connect. 2023.

. 2023 Feb 3;12(3):e220306.

doi: 10.1530/EC-22-0306. Print 2023 Mar 1.

Authors

Affiliations

¹ Department of Pediatrics, Emma Children's Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
² Department of Pediatric Endocrinology, Wilhelmina Children's Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands.
³ Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands.
⁴ Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands.
⁵ Department of Nuclear Medicine, University of Brescia and Spedali Civili of Brescia, Brescia, Italy.
⁶ Department of Pediatrics, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands.
⁷ The Oncologic and Reconstructive Surgery Clinic, M. Sklodowska-Curie National Research Institute of Oncology Gliwice Branch, Gliwice, Poland.
⁸ Department of Endocrinology and Diabetes, Birmingham Children's Hospital, Birmingham Women's, and Children's NHS Foundation Trust, Birmingham, UK.
⁹ Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
¹⁰ Department of Pediatric Endocrinology, Children's Clinical University Hospital, Riga, Latvia.
¹¹ Endocrine Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.
¹² Nuclear Medicine Department, Vall d'Hebron University Hospital, Barcelona, Spain.
¹³ Department of Clinical Genetics, Guy's and St Thomas' NHS Foundation Trust, London, UK.
¹⁴ Division of Endocrinology, Diabetes, and Metabolism, First Department of Pediatrics National and Kapodistrian University of Athens Medical School, Aghia Sophia Children's Hospital, Athens, Greece.
¹⁵ Institute of Experimental Pediatric Endocrinology, Charité - Universitätsmedizin, Berlin, Germany.
¹⁶ Department of Endocrine Oncology, Gustave Roussy, Villejuif, France.
¹⁷ Department of Visceral, Vascular and Endocrine Surgery, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
¹⁸ Department of Nuclear Medicine, University Hospital Marburg, Marburg, Germany.
¹⁹ Department of Endocrinology, Lithuanian University of Health Sciences, Kaunas, Lithuania.
²⁰ Nuclear Medicine Service - Institut de diagnòstic per la Imatge, Hospital Universitari de Girona Dr. Josep Trueta, Girona, Spain.
²¹ Thyroid Therapy Unit, The Royal Marsden NHS Foundation Trust Hospital, London, UK.
²² Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy.
²³ Department of Nuclear Medicine, EO Ospedali Galliera, Genoa, Italy.
²⁴ Department of Medicine, Division of Endocrinology, Leiden, University medical Center, Leiden, The Netherlands.
²⁵ Pediatric Oncology Department, Otto von Guericke University Children's Hospital, Magdeburg, Germany.
²⁶ Regina Margherita Children Hospital - Department of Public Health and Pediatric Sciences, University of Torino, Torino, Italy.
²⁷ University Hospital of São João, Medical Faculty and Institute of Molecular Pathology and Immunology, University of Porto, Porto, Portugal.
²⁸ Department of Pediatric Endocrinology, Emma Children's Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
²⁹ Department of Radiology & Nuclear Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands.
³⁰ Department of Endocrine Surgery, University Medical Center Utrecht, Utrecht, The Netherlands.
³¹ Department of Endocrinology, University Medical Center Groningen, Groningen, The Netherlands.
³² Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK.
³³ Office for Rare Conditions, University of Glasgow, Glasgow, UK.

PMID: 37931414
PMCID: PMC9986407
DOI: 10.1530/EC-22-0306

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.

Keywords: DTC; childhood; registry; thyroid carcinoma.

PubMed Disclaimer

Conflict of interest statement

There is no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.

Figures

**Figure 1**
Patient recruitment framework of the ped-DTC registry.

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

LinkOut - more resources

Full Text Sources