Search Results
S C Clement
S C Clement
Department of Pediatrics, Emma Children’s Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Search for other papers by S C Clement in
Google Scholar
PubMed
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Search for other papers by S C Clement in
Google Scholar
PubMed
W E Visser
W E Visser
Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands
Search for other papers by W E Visser in
Google Scholar
PubMed
Search for other papers by W E Visser in
Google Scholar
PubMed
C A Lebbink
C A Lebbink
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
Search for other papers by C A Lebbink in
Google Scholar
PubMed
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
Search for other papers by C A Lebbink in
Google Scholar
PubMed
D Albano
D Albano
Department of Nuclear Medicine, University of Brescia and Spedali Civili of Brescia, Brescia, Italy
Search for other papers by D Albano in
Google Scholar
PubMed
Search for other papers by D Albano in
Google Scholar
PubMed
H L Claahsen-van der Grinten
H L Claahsen-van der Grinten
Department of Pediatrics, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands
Search for other papers by H L Claahsen-van der Grinten in
Google Scholar
PubMed
Search for other papers by H L Claahsen-van der Grinten in
Google Scholar
PubMed
A Czarniecka
A Czarniecka
The Oncologic and Reconstructive Surgery Clinic, M. Sklodowska-Curie National Research Institute of Oncology Gliwice Branch, Gliwice, Poland
Search for other papers by A Czarniecka in
Google Scholar
PubMed
Search for other papers by A Czarniecka in
Google Scholar
PubMed
R P Dias
R P Dias
Department of Endocrinology and Diabetes, Birmingham Children’s Hospital, Birmingham Women’s, and Children’s NHS Foundation Trust, Birmingham, UK
Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
Search for other papers by R P Dias in
Google Scholar
PubMed
Institute of Metabolism and Systems Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
Search for other papers by R P Dias in
Google Scholar
PubMed
M P Dierselhuis
M P Dierselhuis
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
Search for other papers by M P Dierselhuis in
Google Scholar
PubMed
Search for other papers by M P Dierselhuis in
Google Scholar
PubMed
I Dzivite-Krisane
I Dzivite-Krisane
Department of Pediatric Endocrinology, Children's Clinical University Hospital, Riga, Latvia
Search for other papers by I Dzivite-Krisane in
Google Scholar
PubMed
Search for other papers by I Dzivite-Krisane in
Google Scholar
PubMed
R Elisei
R Elisei
Endocrine Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy
Search for other papers by R Elisei in
Google Scholar
PubMed
Search for other papers by R Elisei in
Google Scholar
PubMed
A Garcia-Burillo
A Garcia-Burillo
Nuclear Medicine Department, Vall d'Hebron University Hospital, Barcelona, Spain
Search for other papers by A Garcia-Burillo in
Google Scholar
PubMed
Search for other papers by A Garcia-Burillo in
Google Scholar
PubMed
L Izatt
L Izatt
Department of Clinical Genetics, Guy's and St Thomas’ NHS Foundation Trust, London, UK
Search for other papers by L Izatt in
Google Scholar
PubMed
Search for other papers by L Izatt in
Google Scholar
PubMed
C Kanaka-Gantenbein
C Kanaka-Gantenbein
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
Search for other papers by C Kanaka-Gantenbein in
Google Scholar
PubMed
Search for other papers by C Kanaka-Gantenbein in
Google Scholar
PubMed
H Krude
H Krude
Institute of Experimental Pediatric Endocrinology, Charité - Universitätsmedizin, Berlin, Germany
Search for other papers by H Krude in
Google Scholar
PubMed
Search for other papers by H Krude in
Google Scholar
PubMed
L Lamartina
L Lamartina
Department of Endocrine Oncology, Gustave Roussy, Villejuif, France
Search for other papers by L Lamartina in
Google Scholar
PubMed
Search for other papers by L Lamartina in
Google Scholar
PubMed
K Lorenz
K Lorenz
Department of Visceral, Vascular and Endocrine Surgery, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany
Search for other papers by K Lorenz in
Google Scholar
PubMed
Search for other papers by K Lorenz in
Google Scholar
PubMed
M Luster
M Luster
Department of Nuclear Medicine, University Hospital Marburg, Marburg, Germany
Search for other papers by M Luster in
Google Scholar
PubMed
Search for other papers by M Luster in
Google Scholar
PubMed
R Navardauskaitė
R Navardauskaitė
Department of Endocrinology, Lithuanian University of Health Sciences, Kaunas, Lithuania
Search for other papers by R Navardauskaitė in
Google Scholar
PubMed
Search for other papers by R Navardauskaitė in
Google Scholar
PubMed
M Negre Busó
M Negre Busó
Nuclear Medicine Service - Institut de diagnòstic per la Imatge, Hospital Universitari de Girona Dr. Josep Trueta, Girona, Spain
Search for other papers by M Negre Busó in
Google Scholar
PubMed
Search for other papers by M Negre Busó in
Google Scholar
PubMed
K Newbold
K Newbold
Thyroid Therapy Unit, The Royal Marsden NHS Foundation Trust Hospital, London, UK
Search for other papers by K Newbold in
Google Scholar
PubMed
Search for other papers by K Newbold in
Google Scholar
PubMed
R P Peeters
R P Peeters
Academic Center For Thyroid Disease, Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands
Search for other papers by R P Peeters in
Google Scholar
PubMed
Search for other papers by R P Peeters in
Google Scholar
PubMed
G Pellegriti
G Pellegriti
Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy
Search for other papers by G Pellegriti in
Google Scholar
PubMed
Search for other papers by G Pellegriti in
Google Scholar
PubMed
A Piccardo
A Piccardo
Department of Nuclear Medicine, EO Ospedali Galliera, Genoa, Italy
Search for other papers by A Piccardo in
Google Scholar
PubMed
Search for other papers by A Piccardo in
Google Scholar
PubMed
A L Priego
A L Priego
Department of Medicine, Division of Endocrinology, Leiden, University medical Center, Leiden, The Netherlands
Search for other papers by A L Priego in
Google Scholar
PubMed
Search for other papers by A L Priego in
Google Scholar
PubMed
A Redlich
A Redlich
Pediatric Oncology Department, Otto von Guericke University Children's Hospital, Magdeburg, Germany
Search for other papers by A Redlich in
Google Scholar
PubMed
Search for other papers by A Redlich in
Google Scholar
PubMed
L de Sanctis
L de Sanctis
Regina Margherita Children Hospital - Department of Public Health and Pediatric Sciences, University of Torino, Torino, Italy
Search for other papers by L de Sanctis in
Google Scholar
PubMed
Search for other papers by L de Sanctis in
Google Scholar
PubMed
M Sobrinho-Simões
M Sobrinho-Simões
University Hospital of São João, Medical Faculty and Institute of Molecular Pathology and Immunology, University of Porto, Porto, Portugal
Search for other papers by M Sobrinho-Simões in
Google Scholar
PubMed
Search for other papers by M Sobrinho-Simões in
Google Scholar
PubMed
A S P van Trotsenburg
A S P van Trotsenburg
Department of Pediatric Endocrinology, Emma Children’s Hospital, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands
Search for other papers by A S P van Trotsenburg in
Google Scholar
PubMed
Search for other papers by A S P van Trotsenburg in
Google Scholar
PubMed
F A Verburg
F A Verburg
Department of Radiology & Nuclear Medicine, Erasmus MC Rotterdam, Rotterdam, The Netherlands
Search for other papers by F A Verburg in
Google Scholar
PubMed
Search for other papers by F A Verburg in
Google Scholar
PubMed
M Vriens
M Vriens
Department of Endocrine Surgery, University Medical Center Utrecht, Utrecht, The Netherlands
Search for other papers by M Vriens in
Google Scholar
PubMed
Search for other papers by M Vriens in
Google Scholar
PubMed
T P Links
T P Links
Department of Endocrinology, University Medical Center Groningen, Groningen, The Netherlands
Search for other papers by T P Links in
Google Scholar
PubMed
Search for other papers by T P Links in
Google Scholar
PubMed
S F Ahmed
S F Ahmed
Endocrinology, Endocrinology Division, Garibaldi-Nesima Medical Center, Catania, Italy
Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK
Office for Rare Conditions, University of Glasgow, Glasgow, UK
Search for other papers by S F Ahmed in
Google Scholar
PubMed
Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK
Office for Rare Conditions, University of Glasgow, Glasgow, UK
Search for other papers by S F Ahmed in
Google Scholar
PubMed
H M van Santen
H M van Santen
Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital/ University Medical Center Utrecht, Utrecht, The Netherlands
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
Search for other papers by H M van Santen in
Google Scholar
PubMed
Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
Search for other papers by H M van Santen in
Google Scholar
PubMed
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.
