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2. Endocriene tumoren

Author

Valk, G. D., van Leeuwaarde, R. S., van Treijen, M. J. C., Links, T. P., Peeters, R. P., Timmers, H. J. L. M., van der Kleij-Corssmit, E. P. M., Dekkers, O. M., Feelders, R. A., Haak, H. R., Biermasz, N. R., Hofland, J., de Herder, W. W., Pereira Arias, A. M., Lips, P. T. A. M., Smit, J. W. A., Lips, C. J. M., Kapiteijn, H. W., Kievit, J., ten Kroode, H. F., van Krieken, J.H.J.M., editor, Beets-Tan, R.G.H., editor, Gelderblom, A.J., editor, Olofsen, M.J.J., editor, and Rutten, H.J.T., editor

Published
2020
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3. Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project:rationale and protocol

Author

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

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.

Published
2023

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

Author

Endocrinologie onderzoek, Arts-assistenten Kinderen, CTI Van der Vlist, Cancer, Heelkunde Opleiding, MS CGO, Endocrinologie patientenzorg, Brain, Child Health, 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., Newbold, K., Peeters, R. P., Pellegriti, G., Piccardo, A., Priego, A. L., Redlich, A., de Sanctis, L., Sobrinho-Simões, M., van Trotsenburg, A. S.P., Verburg, F. A., Vriens, M., Links, T. P., Ahmed, S. F., van Santen, H. M., Endocrinologie onderzoek, Arts-assistenten Kinderen, CTI Van der Vlist, Cancer, Heelkunde Opleiding, MS CGO, Endocrinologie patientenzorg, Brain, Child Health, 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., Newbold, K., Peeters, R. P., Pellegriti, G., Piccardo, A., Priego, A. L., Redlich, A., de Sanctis, L., Sobrinho-Simões, M., van Trotsenburg, A. S.P., Verburg, F. A., Vriens, M., Links, T. P., Ahmed, S. F., and van Santen, H. M.

Published
2023

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

Author

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

Published
2023
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20. New national recommendations for the treatment of pediatric differentiated thyroid carcinoma in the Netherlands

Author

Lebbink, C A, primary, Dekker, B L, additional, Bocca, G, additional, Braat, A J A T, additional, Derikx, J P M, additional, Dierselhuis, M P, additional, de Keizer, B, additional, Kruijff, S, additional, Kwast, A B G, additional, van Nederveen, F H, additional, Nieveen van Dijkum, E J M, additional, Nievelstein, R A J, additional, Peeters, R P, additional, Terwisscha van Scheltinga, C E J, additional, Tissing, W J E, additional, van der Tuin, K, additional, Vriens, M R, additional, Zsiros, J, additional, van Trotsenburg, A S P, additional, Links, T P, additional, and van Santen, H M, additional

Published
2020
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29. New national recommendations for the treatment of pediatric differentiated thyroid carcinoma in the Netherlands

Author

Endocrinologie onderzoek, RF&S Team 1 Medisch, MS Radiologie, Arts-assistenten Kinderen, Cancer, Arts-assistenten Radiologie, Other research (not in main researchprogram), PMC Medisch specialisten, Arts Assistenten CTC, Heelkunde Opleiding, MS CGO, Endocrinologie patientenzorg, Brain, Child Health, Lebbink, C. A., Dekker, B. L., Bocca, G., Braat, A. J.A.T., Derikx, J. P.M., Dierselhuis, M. P., de Keizer, B., Kruijff, S., Kwast, A. B.G., van Nederveen, F. H., Nieveen van Dijkum, E. J.M., Nievelstein, R. A.J., Peeters, R. P., Terwisscha van Scheltinga, C. E.J., Tissing, W. J.E., van der Tuin, K., Vriens, M. R., Zsiros, J., van Trotsenburg, A. S.P., Links, T. P., van Santen, H. M., Endocrinologie onderzoek, RF&S Team 1 Medisch, MS Radiologie, Arts-assistenten Kinderen, Cancer, Arts-assistenten Radiologie, Other research (not in main researchprogram), PMC Medisch specialisten, Arts Assistenten CTC, Heelkunde Opleiding, MS CGO, Endocrinologie patientenzorg, Brain, Child Health, Lebbink, C. A., Dekker, B. L., Bocca, G., Braat, A. J.A.T., Derikx, J. P.M., Dierselhuis, M. P., de Keizer, B., Kruijff, S., Kwast, A. B.G., van Nederveen, F. H., Nieveen van Dijkum, E. J.M., Nievelstein, R. A.J., Peeters, R. P., Terwisscha van Scheltinga, C. E.J., Tissing, W. J.E., van der Tuin, K., Vriens, M. R., Zsiros, J., van Trotsenburg, A. S.P., Links, T. P., and van Santen, H. M.

Published
2020

30. Recommendations on Surveillance for Differentiated Thyroid Carcinoma in Children with PTEN Hamartoma Tumor Syndrome

Author

Utrecht Valorisatie Centrum, Endocrinologie onderzoek, Genetica, MS Neonatologie, Arts-assistenten Radiologie, Other research (not in main researchprogram), PMC Medisch specialisten, Endocrinologie patientenzorg, Brain, Child Health, Cancer, Jonker, L A, Lebbink, C A, Jongmans, M C J, Nievelstein, R A J, Merks, J H M, Nieveen van Dijkum, E J M, Links, T P, Hoogerbrugge, N, van Trotsenburg, A S P, van Santen, H M, Utrecht Valorisatie Centrum, Endocrinologie onderzoek, Genetica, MS Neonatologie, Arts-assistenten Radiologie, Other research (not in main researchprogram), PMC Medisch specialisten, Endocrinologie patientenzorg, Brain, Child Health, Cancer, Jonker, L A, Lebbink, C A, Jongmans, M C J, Nievelstein, R A J, Merks, J H M, Nieveen van Dijkum, E J M, Links, T P, Hoogerbrugge, N, van Trotsenburg, A S P, and van Santen, H M

Published
2020

39. Focal Thyroid Incidentalomas on 18F-FDG PET/CT: A Systematic Review and Meta-Analysis on Prevalence, Risk of Malignancy and Inconclusive Fine Needle Aspiration.

Author

de Leijer, J. F., Metman, M. J. H., van der Hoorn, A., Brouwers, A. H., Kruijff, S., van Hemel, B. M., Links, T. P., and Westerlaan, H. E.

Subjects
NEEDLE biopsy, THYROID diseases, COMPUTED tomography, POSITRON emission tomography computed tomography, THYROID gland, THYROID cancer
Abstract

Background: The rising demand for 18F-fluorodeoxyglucose positron emission tomography with computed tomography (18F-FDG PET/CT) has led to an increase of thyroid incidentalomas. Current guidelines are restricted in giving options to tailor diagnostics and to suit the individual patient. Objectives: We aimed at exploring the extent of potential overdiagnostics by performing a systematic review and meta-analysis of the literature on the prevalence, the risk of malignancy (ROM) and the risk of inconclusive FNAC (ROIF) of focal thyroid incidentalomas (FTI) on 18F-FDG PET/CT. Data Sources: A literature search in MEDLINE, Embase and Web of Science was performed to identify relevant studies. Study Selection: Studies providing information on the prevalence and/or ROM of FTI on 18F-FDG PET/CT in patients with no prior history of thyroid disease were selected by two authors independently. Sixty-one studies met the inclusion criteria. Data Analysis: A random effects meta-analysis on prevalence, ROM and ROIF with 95% confidence intervals (CIs) was performed. Heterogeneity and publication bias were tested. Risk of bias was assessed using the quality assessment of diagnostic accuracy studies (QUADAS-2) tool. Data Synthesis: Fifty studies were suitable for prevalence analysis. In total, 12,943 FTI were identified in 640,616 patients. The pooled prevalence was 2.22% (95% CI = 1.90% - 2.54%, I2 = 99%). 5151 FTI had cyto- or histopathology results available. The pooled ROM was 30.8% (95% CI = 28.1% - 33.4%, I2 = 57%). 1308 (83%) of malignant nodules were papillary thyroid carcinoma (PTC). The pooled ROIF was 20.8% (95% CI = 13.7% - 27.9%, I2 = 92%). Limitations: The main limitations were the low to moderate methodological quality of the studies and the moderate to high heterogeneity of the results. Conclusion: FTI are a common finding on 18F-FDG PET/CTs. Nodules are malignant in approximately one third of the cases, with the majority being PTC. Cytology results are non-diagnostic or indeterminate in one fifth of FNACs. These findings reveal the potential risk of overdiagnostics of FTI and emphasize that the workup of FTI should be performed within the context of the patient's disease and that guidelines should adopt this patient tailored approach. [ABSTRACT FROM AUTHOR]

Published
2021
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43. Transient thyrotoxicosis during nivolumab treatment

Author

van Kooten, M. J., van den Berg, G., Glaudemans, A. W. J. M., Hiltermann, T. J. N., Groen, H. J. M., Rutgers, A., Links, T. P., Translational Immunology Groningen (TRIGR), Damage and Repair in Cancer Development and Cancer Treatment (DARE), Guided Treatment in Optimal Selected Cancer Patients (GUTS), and ​Basic and Translational Research and Imaging Methodology Development in Groningen (BRIDGE)

Subjects
DOCETAXEL, lung cancer, ADVANCED MELANOMA, CELL LUNG-CANCER, Checkpoint inhibition, thyroiditis, thyrotoxicosis, immune related adverse reactions, IMMUNE CHECKPOINT INHIBITORS, PEMBROLIZUMAB, TOXICITIES
Abstract

Two patients presented with transient thyrotoxicosis within 2-4 weeks after starting treatment with nivolumab. This thyrotoxicosis turned into hypothyroidism within 6-8 weeks. Temporary treatment with a beta blocker may be sufficient.

Published
2017

45. Prevalence and mutation spectrum of skeletal muscle channelopathies in the Netherlands

Author

Stunnenberg, B. C., Stunnenberg, B. C., Raaphorst, J., Deenen, J. C. W., Links, T. P., Wilde, A. A., Verbove, D. J., Kamsteeg, E. J., van den Wijngaard, A., Faber, C. G., van der Wilt, G. J., van Engelen, B. G. M., Drost, G., Ginjaar, H. B., Stunnenberg, B. C., Stunnenberg, B. C., Raaphorst, J., Deenen, J. C. W., Links, T. P., Wilde, A. A., Verbove, D. J., Kamsteeg, E. J., van den Wijngaard, A., Faber, C. G., van der Wilt, G. J., van Engelen, B. G. M., Drost, G., and Ginjaar, H. B.

Abstract

Few reliable data exist on the prevalence of skeletal muscle channelopathies. We determined the minimum point prevalence of genetically defined skeletal muscle channelopathies in the Netherlands and report their mutation spectrum. Minimum point prevalence rates were calculated as number of genetically-confirmed skeletal muscle channelopathy patients (CLCNJ, SCN4A, CACNAIS and KCNJ2 gene mutations) in the Netherlands (1990-2015) divided by the total number of at-risk individuals. Rates were expressed as cases/100.000 and 95% confidence intervals were calculated based on Poisson distribution. Results of standardized genetic diagnostic procedures were used to analyze mutation spectra. We identified 405 patients from 234 unrelated pedigrees, resulting in a minimum point prevalence of 2.38/100.000 (95% CI 2.16-2.63) for skeletal muscle channelopathies in the Netherlands. Minimum point prevalence rates for the disease groups, non-dystrophic myotonia and periodic paralysis, were 1.70/100.000 and 0.69/100.000 respectively. Sixty-one different CLCN1 mutations (including 12 novel mutations) were detected in myotonia congenita. Twenty-eight different SCN4A missense mutations (including three novel mutations) were identified in paramyotonia congenita/sodium channel myotonia, hypokalemic periodic paralysis and hyperkalemic periodic paralysis. Four different CACNAIS missense mutations were detected in hypokalemic periodic paralysis and five KCNJ2 missense mutations in Andersen Tawil syndrome. The minimum point prevalence rates for genetically-defined skeletal muscle channelopathies confirm their rare disease status in the Netherlands. Rates are almost twice as high as in the UK and more in line with pre-genetic prevalence estimates in parts of Scandinavia. Future diagnostic and therapeutic studies may benefit from knowledge of the mutation spectrum of skeletal muscle channelopathies. (C) 2018 Elsevier B.V. All rights reserved.

Published
2018

46. Risk stratification for healthcare planning in women with gestational diabetes mellitus

Author

Koning, S. H., Scheuneman, K. A., Lutgers, H. L., Korteweg, F. J., van den Berg, G., Sollie, K. M., Roos, A., van Loon, A. J., Links, T. P., van Tol, K. M., Hoogenberg, K., Berg, van den, Paul, Wolffenbuttel, B. H. R., Damage and Repair in Cancer Development and Cancer Treatment (DARE), Guided Treatment in Optimal Selected Cancer Patients (GUTS), Reproductive Origins of Adult Health and Disease (ROAHD), Lifestyle Medicine (LM), and Center for Liver, Digestive and Metabolic Diseases (CLDM)

Subjects
predictors, INCREASING PREVALENCE, INSULIN-TREATMENT, IMPACT, insulin therapy, DIAGNOSTIC-CRITERIA, PREGNANCY OUTCOMES, NEED, risk stratification, GLUCOSE-TOLERANCE, THERAPY, gestational diabetes mellitus, Diet
Abstract

Background: To identify relevant factors predicting the need for insulin therapy in women with gestational diabetes mellitus (GDM) and secondly to determine a potential 'low-risk' diet-treated group who are likely to have good pregnancy outcomes. Methods: A retrospective analysis between 2011-2014. Multivariable backward stepwise logistic regression was used to identify the predictors of the need for insulin therapy. To identify a 'low-risk' diet-treated group, the group was stratified according to pregnancy complications. Diet-treated women with indications for induction in secondary care were excluded. Results: A total of 820 GDM women were included, 360 (44%) women required additional insulin therapy. The factors predicting the need for insulin therapy were: previous GDM, family history of diabetes, a previous infant weighing >= 4500 gram, Middle-East/North-African descent, multiparity, pre-gestational BMI >= 30 kg/m(2), and an increased fasting glucose level >= 5.5 mmol/l (OR 6.03; CI 3.56-10.22) and two-hour glucose level > 9.4 mmol/l after a 75-gram oral glucose tolerance test at GDM diagnosis. In total 125 (54%) women treated with diet only had pregnancy complications. Primiparity and higher weight gain during pregnancy were the best predictors for complications (predictive probability 0.586 and 0.603). Conclusion: In this GDM population we found various relevant factors predicting the need for insulin therapy. A fasting glucose level = 5.5 mmol/l at GDM diagnosis was by far the strongest predictor. Women with GDM who had good glycaemic control on diet only with a higher parity and less weight gain had a lower risk for pregnancy complications.

Published
2016

48. Serial 89Zr-bevacizumab PET in Patients with Neuroendocrine Tumors before and on Everolimus Treatment

Author

Brouwers, A. H., Van Asselt, S. J., Oosting, S. F., De Jong, J. R., Lub-de Hooge, M. N., Bongaerts, A. H. H., Oude Munnink, Thijs, Fiebrich, H. B., Sluiter, W. J., Links, T. P., Walenkamp, A. M. E., de Vries, Liesbeth, Damage and Repair in Cancer Development and Cancer Treatment (DARE), and Guided Treatment in Optimal Selected Cancer Patients (GUTS)

Subjects
biomarker, vegf-a, neuroendocrine tumors, everolimus, 89zr-bevacizumab pet
Published
2014

49. Unexpected symptoms after rhTSH administration due to occult thyroid carcinoma metastasis

Author

Wolffenbuttel, B H R, Coppes, M H, Bongaerts, A H H, Glaudemans, A W J M, Links, T P, Damage and Repair in Cancer Development and Cancer Treatment (DARE), Life Course Epidemiology (LCE), Guided Treatment in Optimal Selected Cancer Patients (GUTS), Lifestyle Medicine (LM), Translational Immunology Groningen (TRIGR), and Center for Liver, Digestive and Metabolic Diseases (CLDM)

Subjects
surgery, side effects, THYROGLOBULIN, THYROTROPIN STIMULATION, EMISSION TOMOGRAPHY/COMPUTED TOMOGRAPHY, TSH, Carcinoma, metastasis, RECURRENCE, PATIENT, CANCER, STIMULATING HORMONE USE, rhTSH
Abstract

F-18-fluorodeoxyglucose positron emission tomography ((18)FDG-PET) scintigraphy is a useful imaging technique in the evaluation of metastasised thyroid carcinoma. Administration of recombinant human thyrotropin (rhTSH, Thyrogen (R)) increases the diagnostic yield of this procedure. Here we present a 64-year-old male who was followed for Hurthle cell carcinoma of the thyroid with several intrapulmonary metastases. He developed sudden complaints of neck pain following rhTSH administration as part of the routine preparation for a diagnostic (18)FDG-PET/CT procedure. This investigation subsequently revealed a previously undetected metastatic lesion in the first cervical vertebra, with no signs of spinal cord compression. Treatment with a nonsteroidal anti-inflammatory drug reduced the symptoms sufficiently, and a few weeks later the neurosurgeon performed a complete resection of the metastasis. It is likely that the symptoms were caused by oedema and/or increased blood flow to the lesion. Physicians should be aware that rhTSH administration to patients with disseminated thyroid carcinoma may lead to sudden onset of symptoms caused by previously occult metastases.

Published
2013

50. Homozygous <italic>TMEM127</italic> mutations in 2 patients with bilateral pheochromocytomas.

Author

Eijkelenkamp, K., Kerstens, M. N., Links, T. P., van der Horst‐Schrivers, A. N. A., Olderode‐Berends, M. J. W., van der Luijt, R. B., Robledo, M., van Dooren, M., Feelders, R. A., and de Vries, J.

Subjects
HOMOZYGOSITY, PARAGANGLIOMA, PHEOCHROMOCYTOMA, GENETIC mutation, NEUROENDOCRINE tumors
Abstract

Pheochromocytoma (PCC) and paraganglioma (PGL) are rare neuroendocrine tumors that are hereditary in up to 50% of patients. The gene encoding transmembrane‐protein‐127 (TMEM127) is one of the PCC/PGL‐susceptibility genes with an autosomal dominant inheritance pattern. Here, we report 2 patients with bilateral PCC who both harbored a homozygous TMEM127‐mutation. In a 31‐year‐old mentally retarded patient, the homozygous c.410‐2A > G mutation was discovered during an update of DNA analysis. A 26‐year‐old mentally retarded patient was found to have a homozygous c.3G > A mutation. The parents of both patients were consanguineous. We reviewed previously reported clinical features of TMEM127 mutation carriers and compared our findings with case descriptions of homozygous mutations in other PGL/PCC‐susceptibility genes. Homozygosity for an autosomal dominant inherited disorder is an extremely rare phenomenon and has, to our knowledge, not been reported before for the gene encoding TMEM127. In the present cases, the clinical picture does not seem to be very different from heterozygous TMEM127 mutation carriers, except for a relatively large tumor size and more pronounced plasma metanephrine concentration. It is unclear whether the mental retardation is causally related to homozygosity of the TMEM127 mutations. Updating genetic screening in patients in whom PCC/PGL has been diagnosed in the past should be considered as it might provide clinically relevant information. [ABSTRACT FROM AUTHOR]

Published
2018
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