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2. Overview of European standard clinical practice recommendations for multidiscplinary teams involved in the treatment of central nervous system tumours in children and adolescents – SIOPE Brain Tumour Group

Author

Otth, Maria, Scheinemann, Katrin, Ajithkumar, Thankamma, Aquilina, Kristian, Avula, Shivaram, Gan, Hoong-Wei, Janssens, Geert O., Lemiere, Jurgen, Morana, Giovanni, Opocher, Enrico, Pfister, Stefan M., Porro, Giorgio, Sahm, Felix, Thomale, Ulrich-Wilhelm, van Egmond-Ebbeling, Michelle, van Santen, Hanneke M., Pizer, Barry, and Rutkowski, Stefan

Published
2024
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3. A joint international consensus statement for measuring quality of survival for patients with childhood cancer

Author

van Kalsbeek, Rebecca J., Hudson, Melissa M., Mulder, Renée L., Ehrhardt, Matthew, Green, Daniel M., Mulrooney, Daniel A., Hakkert, Jessica, den Hartogh, Jaap, Nijenhuis, Anouk, van Santen, Hanneke M., Schouten-van Meeteren, Antoinette Y. N., van Tinteren, Harm, Verbruggen, Lisanne C., Conklin, Heather M., Jacola, Lisa M., Webster, Rachel Tillery, Partanen, Marita, Kollen, Wouter J. W., Grootenhuis, Martha A., Pieters, Rob, and Kremer, Leontien C. M.

Published
2023
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4. Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer

Author

van Kalsbeek, Rebecca J., Hudson, Melissa M., Mulder, Renée L., Ehrhardt, Matthew, Green, Daniel M., Mulrooney, Daniel A., Hakkert, Jessica, den Hartogh, Jaap, Nijenhuis, Anouk, van Santen, Hanneke M., Schouten-van Meeteren, Antoinette Y. N., van Tinteren, Harm, Verbruggen, Lisanne C., Conklin, Heather M., Jacola, Lisa M., Webster, Rachel Tillery, Partanen, Marita, Kollen, Wouter J. W., Grootenhuis, Martha A., Pieters, Rob, and Kremer, Leontien C. M.

Published
2024
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6. Hydrocortisone to reduce dexamethasone-induced neurobehavioral side-effects in children with acute lymphoblastic leukaemia—results of a double-blind, randomised controlled trial with cross-over design

Author

van Hulst, Annelienke M., van den Akker, Erica L.T., Verwaaijen, Emma J., Fiocco, Marta, Rensen, Niki, van Litsenburg, Raphaële R.L., Pluijm, Saskia M.F., Zwaan, C. Michel, van Santen, Hanneke M., Pieters, Rob, Evers, Andrea W.M., Grootenhuis, Martha A., and van den Heuvel-Eibrink, Marry M.

Published
2023
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9. Risk and determinants of low and very low bone mineral density and fractures in a national cohort of Dutch adult childhood cancer survivors (DCCSS-LATER): a cross-sectional study

Author

van Atteveld, Jenneke E, de Winter, Demi T C, Pluimakers, Vincent G, Fiocco, Marta, Nievelstein, Rutger A J, Hobbelink, Monique G G, de Vries, Andrica C H, Loonen, Jacqueline J, van Dulmen-den Broeder, Eline, van der Pal, Helena J, Pluijm, Saskia M F, Kremer, Leontien C M, Ronckers, Cécile M, van der Heiden-van der Loo, Margriet, Versluijs, A Birgitta, Louwerens, Marloes, Bresters, Dorine, van Santen, Hanneke M, Olsson, Daniel S, Hoefer, Imo, van den Berg, Sjoerd A A, den Hartogh, Jaap, Tissing, Wim J E, Neggers, Sebastian J C M M, and van den Heuvel-Eibrink, Marry M

Published
2023
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13. The Definition of Recurrence of Differentiated Thyroid Cancer: A Systematic Review of the Literature.

Author

van de Berg, Daniël J., Rodriguez Schaap, Pedro M., Jamaludin, Faridi S., van Santen, Hanneke M., Clement, Sarah C., Vriens, Menno R., van Trotsenburg, A. S Paul, Mooij, Christiaan F., Bruinstroop, Eveline, Kruijff, Schelto, Peeters, Robin P., Verburg, Frederik A., Netea-Maier, Romana T., Nieveen van Dijkum, Els J. M., Derikx, Joep P. M., and Engelsman, Anton F.

Subjects
IODINE isotopes, DISEASE relapse, DATA extraction, THYROIDECTOMY, DIAGNOSTIC imaging
Abstract

Background: Recurrence is a key outcome to evaluate the treatment effect of differentiated thyroid carcinoma (DTC). However, no consistent definition of recurrence is available in current literature or international guidelines. Therefore, the primary aim of this systematic review was to delineate the definitions of recurrence of DTC, categorized by total thyroidectomy with radioactive iodine ablation (RAI), total thyroidectomy without RAI and lobectomy, to assess if there is a generally accepted definition among these categories. Methods: This study adhered to the 2020 Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. In December 2023, a systematic literature search in MEDLINE and EMBASE was performed for studies reporting on the recurrence of DTC, from January 2018 to December 2023. Studies that did not provide a definition were excluded. Primary outcome was the definition of recurrence of DTC. Secondary outcome was whether studies differentiated between recurrence and persistent disease. Two independent investigators screened the titles and abstracts, followed by full-text assessment and data extraction. The study protocol was registered in PROSPERO, CRD42021291753. Results: In total, 1450 studies were identified. Seventy studies met the inclusion criteria, including 69 retrospective studies and 1 randomised controlled trial (RCT). Median number of patients in the included studies was 438 (range 25–2297). In total, 17 studies (24.3%) reported on lobectomy, 4 studies (5.7%) on total thyroidectomy without RAI, and 49 studies (70.0%) with RAI. All studies defined recurrence using one or a combination of four diagnostic modalities cytology/pathology, imaging studies, thyroglobulin (-antibodies), and a predetermined minimum tumor-free time span. The most common definition of recurrence following lobectomy was cytology/pathology-proven recurrence (47.1% of this subgroup), following total thyroidectomy with RAI was cytology/pathology-proven recurrence and/or anomalies detected on imaging studies (22.4% of this subgroup). No consistent definition was found following total thyroidectomy without RAI. Nine studies (12.9%) differentiated between recurrence and persistent disease. Conclusion: Our main finding is that there is no universally accepted definition for recurrence of DTC in the current studies across any of the treatment categories. The findings of this study will provide the basis for a future, international Delphi-based proposal to establish a universally accepted definition of recurrence of DTC. A uniform definition could facilitate global discussion and enhance the assessment of treatment outcomes regarding recurrence of DTC. [ABSTRACT FROM AUTHOR]

Published
2024
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14. Hypothalamic syndrome

Author

Müller, Hermann L., Tauber, Maithé, Lawson, Elizabeth A., Özyurt, Jale, Bison, Brigitte, Martinez-Barbera, Juan-Pedro, Puget, Stephanie, Merchant, Thomas E., and van Santen, Hanneke M.

Published
2022
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16. Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Anderson, Richard A, Barnbrock, Anke, Beck, Joern D, Bos, Annelies M E, Calaminus, Gabriele, Constine, Louis S, Demeestere, Isabelle, Denzer, Christian, Grabow, Desiree, di Iorgi, Natascia, Hoefgen, Holly R, Jahnukainen, Kirsi, Kaatsch, Peter, Kebudi, Rejin, Lambalk, Cornelis, Langer, Thorsten, Loonen, Jacqueline, Lorenzo, Armando, Meacham, Lillian R, Meissner, Andreas, Mitchell, Rod T, Nahata, Leena, Ranft, Andreas, Dinkelman-Smit, Marij, Stern, Catharyn, Stutz-Grunder, Eveline, Tournaye, Herman, van Dorp, Wendy, van Pelt, Ans M M, de Vries, Andrica, Yu, Richard, Mulder, Renée L, Font-Gonzalez, Anna, van Dulmen-den Broeder, Eline, Quinn, Gwendolyn P, Ginsberg, Jill P, Loeffen, Erik A H, Hudson, Melissa M, Burns, Karen C, van Santen, Hanneke M, Berger, Claire, Diesch, Tamara, Dirksen, Uta, Giwercman, Aleksander, Gracia, Clarisa, Hunter, Sarah E, Kelvin, Joanne F, Klosky, James L, Laven, Joop S E, Lockart, Barbara A, Neggers, Sebastian J C M M, Peate, Michelle, Phillips, Bob, Reed, Damon R, Tinner, Eva Maria E, Byrne, Julianne, Veening, Margreet, van de Berg, Marleen, Verhaak, Chris M, Anazodo, Antoinette, Rodriguez-Wallberg, Kenny, van den Heuvel-Eibrink, Marry M, Asogwa, Ogechukwu A, Brownsdon, Alexandra, Wallace, W Hamish, Green, Daniel M, Skinner, Roderick, Haupt, Riccardo, Kenney, Lisa B, Levine, Jennifer, van de Wetering, Marianne D, Tissing, Wim J E, Paul, Norbert W, Kremer, Leontien C M, and Inthorn, Julia

Published
2021
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17. Fertility preservation for female patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Berger, Claire, Diesch, Tamara, Dirksen, Uta, Ginsberg, Jill, Giwercman, Aleksander, Grabow, Desiree, Gracia, Clarisa, Hunter, Sarah E, Inthorn, Julia, Kaatsch, Peter, Kelvin, Joanne F, Klosky, James L, Laven, Joop S E, Lockart, Barbara A, Neggers, Sebastian JCMM, Paul, Norbert W, Peate, Michelle, Phillips, Bob, Reed, Damon R, Tinner, Eva Maria E, van den Berg, Marleen, Verhaak, Chris, Mulder, Renée L, Font-Gonzalez, Anna, Hudson, Melissa M, van Santen, Hanneke M, Loeffen, Erik A H, Burns, Karen C, Quinn, Gwendolyn P, van Dulmen-den Broeder, Eline, Byrne, Julianne, Haupt, Riccardo, Wallace, W Hamish, van den Heuvel-Eibrink, Marry M, Anazodo, Antoinette, Anderson, Richard A, Barnbrock, Anke, Beck, Joern D, Bos, Annelies M E, Demeestere, Isabelle, Denzer, Christian, Di Iorgi, Natascia, Hoefgen, Holly R, Kebudi, Rejin, Lambalk, Cornelis, Langer, Thorsten, Meacham, Lillian R, Rodriguez-Wallberg, Kenny, Stern, Catharyn, Stutz-Grunder, Eveline, van Dorp, Wendy, Veening, Margreet, Veldkamp, Saskia, van der Meulen, Eline, Constine, Louis S, Kenney, Lisa B, van de Wetering, Marianne D, Kremer, Leontien C M, Levine, Jennifer, and Tissing, Wim J E

Published
2021
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18. Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group

Author

Berger, Claire, Diesch, Tamara, Giwercman, Aleksander, Grabow, Desiree, Gracia, Clarisa, Hunter, Sarah E, Inthorn, Julia, Kaatsch, Peter, Kelvin, Joanne F, Klosky, James L, Laven, Joop S E, Lockart, Barbara A, Neggers, Sebastian JCMM, Paul, Norbert W, Peate, Michelle, Phillips, Bob, Quinn, Gwendolyn P, Reed, Damon R, Tinner, Eva Maria E, van den Berg, Marleen, Verhaak, Chris, Mulder, Renée L, Font-Gonzalez, Anna, Green, Daniel M, Loeffen, Erik A H, Hudson, Melissa M, Loonen, Jacqueline, Yu, Richard, Ginsberg, Jill P, Mitchell, Rod T, Byrne, Julianne, Skinner, Roderick, Anazodo, Antoinette, Constine, Louis S, de Vries, Andrica, Jahnukainen, Kirsi, Lorenzo, Armando, Meissner, Andreas, Nahata, Leena, Dinkelman-Smit, Marij, Tournaye, Herman, Haupt, Riccardo, van den Heuvel-Eibrink, Marry M, van Santen, Hanneke M, van Pelt, Ans M M, Dirksen, Uta, den Hartogh, Jaap, van Dulmen-den Broeder, Eline, Wallace, W Hamish, Levine, Jennifer, Tissing, Wim J E, Kremer, Leontien C M, Kenney, Lisa B, and van de Wetering, Marianne D

Published
2021
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19. Differences in checkpoint-inhibitor-induced hypophysitis: mono- versus combination therapy induced hypophysitis

Author

MS Interne Geneeskunde, MS Medische Oncologie, Cancer, Infection & Immunity, MS Endocriene Oncologie, MS Radiologie, Brain, Circulatory Health, Endocrinologie patientenzorg, Child Health, van der Leij, Stephanie, Suijkerbuijk, Karijn P M, van den Broek, Medard F M, Valk, Gerlof D, Dankbaar, Jan Willem, van Santen, Hanneke M, MS Interne Geneeskunde, MS Medische Oncologie, Cancer, Infection & Immunity, MS Endocriene Oncologie, MS Radiologie, Brain, Circulatory Health, Endocrinologie patientenzorg, Child Health, van der Leij, Stephanie, Suijkerbuijk, Karijn P M, van den Broek, Medard F M, Valk, Gerlof D, Dankbaar, Jan Willem, and van Santen, Hanneke M

Published
2024

20. A 14-year-old girl with premature ovarian insufficiency but with a positive pregnancy test

Author

Touwslager, Robbert N.H., Zwaan, C. Michel, Bakker, Boudewijn, Lentjes, Eef G.W.M., Looijenga, Leendert H.J., Van Santen, Hanneke M., Touwslager, Robbert N.H., Zwaan, C. Michel, Bakker, Boudewijn, Lentjes, Eef G.W.M., Looijenga, Leendert H.J., and Van Santen, Hanneke M.

Abstract

Objectives: Childhood cancer survivors are at risk for premature ovarian insufficiency, especially after treatment with alkylating agents. The objective of this report is to highlight a case in which this phenomenon caused a false-positive pregnancy test. Case presentation: A workup was performed in a 14-year-old girl with a positive pregnancy test. She was diagnosed with stage IV neuroblastoma of the left adrenal gland at the age of 4 years. She received extensive treatment, including alkylating agents, and had been diagnosed with premature ovarian insufficiency. An LH/hCG suppression test was performed using high dose 17 bèta-estradiol: hCG levels normalized. Conclusions: The pregnancy test was false-positive due to production of low amounts of hCG by the pituitary gland as a result of high LH concentrations following premature ovarian insufficiency. It may be helpful to perform the LH/hCG suppression test to prove pituitary origin of the hCG overproduction.

Published
2024

21. The development of fatigue after treatment for pediatric brain tumors does not differ between tumor locations

Author

P&O Programma's, Flex en UMCU-breed, Endocrinologie patientenzorg, Brain, Cancer, Child Health, Highfield Research Group, Speerpunt, Zorg en O&O, Irestorm, Elin, Schouten-van Meeteren, Antoinette Y.N., van Gorp, Marloes, Twisk, Jos W.R., van Santen, Hanneke M., Partanen, Marita, Grootenhuis, Martha A., van Litsenburg, Raphaele R.L., P&O Programma's, Flex en UMCU-breed, Endocrinologie patientenzorg, Brain, Cancer, Child Health, Highfield Research Group, Speerpunt, Zorg en O&O, Irestorm, Elin, Schouten-van Meeteren, Antoinette Y.N., van Gorp, Marloes, Twisk, Jos W.R., van Santen, Hanneke M., Partanen, Marita, Grootenhuis, Martha A., and van Litsenburg, Raphaele R.L.

Published
2024

22. A 14-year-old girl with premature ovarian insufficiency but with a positive pregnancy test

Author

Endocrinologie patientenzorg, CDL Poli WKZ, CDL Cluster Speciële Diagnostiek, Other research (not in main researchprogram), Pathologie Groep Van Diest, Pathologie patiënten zorg, Brain, Cancer, Child Health, Touwslager, Robbert N.H., Michel Zwaan, C., Bakker, Boudewijn, Lentjes, Eef G.W.M., Looijenga, Leendert H.J., van Santen, Hanneke M., Endocrinologie patientenzorg, CDL Poli WKZ, CDL Cluster Speciële Diagnostiek, Other research (not in main researchprogram), Pathologie Groep Van Diest, Pathologie patiënten zorg, Brain, Cancer, Child Health, Touwslager, Robbert N.H., Michel Zwaan, C., Bakker, Boudewijn, Lentjes, Eef G.W.M., Looijenga, Leendert H.J., and van Santen, Hanneke M.

Published
2024

23. Primary Hypothyroidism in Childhood Cancer Survivors Treated With Radiation Therapy: A PENTEC Comprehensive Review

Author

Klinische Fysica RT, Endocrinologie patientenzorg, Brain, Child Health, Cancer, Milano, Michael T, Vargo, John A, Yorke, Ellen D, Ronckers, Cécile M, Kremer, Leontien C, Chafe, Susan M J, van Santen, Hanneke M, Marks, Lawrence B, Bentzen, Søren M, Constine, Louis S, Vogelius, Ivan R, Klinische Fysica RT, Endocrinologie patientenzorg, Brain, Child Health, Cancer, Milano, Michael T, Vargo, John A, Yorke, Ellen D, Ronckers, Cécile M, Kremer, Leontien C, Chafe, Susan M J, van Santen, Hanneke M, Marks, Lawrence B, Bentzen, Søren M, Constine, Louis S, and Vogelius, Ivan R

Published
2024

24. Overview of European standard clinical practice recommendations for multidiscplinary teams involved in the treatment of central nervous system tumours in children and adolescents – SIOPE Brain Tumour Group

Author

MS Radiotherapie, Cancer, Zorgeenheid Oogheelkunde Medisch, MS Oogheelkunde, Brain, Endocrinologie patientenzorg, Child Health, Otth, Maria, Scheinemann, Katrin, Ajithkumar, Thankamma, Aquilina, Kristian, Avula, Shivaram, Gan, Hoong Wei, Janssens, Geert O., Lemiere, Jurgen, Morana, Giovanni, Opocher, Enrico, Pfister, Stefan M., Porro, Giorgio, Sahm, Felix, Thomale, Ulrich Wilhelm, van Egmond-Ebbeling, Michelle, van Santen, Hanneke M., Pizer, Barry, Rutkowski, Stefan, MS Radiotherapie, Cancer, Zorgeenheid Oogheelkunde Medisch, MS Oogheelkunde, Brain, Endocrinologie patientenzorg, Child Health, Otth, Maria, Scheinemann, Katrin, Ajithkumar, Thankamma, Aquilina, Kristian, Avula, Shivaram, Gan, Hoong Wei, Janssens, Geert O., Lemiere, Jurgen, Morana, Giovanni, Opocher, Enrico, Pfister, Stefan M., Porro, Giorgio, Sahm, Felix, Thomale, Ulrich Wilhelm, van Egmond-Ebbeling, Michelle, van Santen, Hanneke M., Pizer, Barry, and Rutkowski, Stefan

Published
2024

25. The cumulative burden of self-reported, clinically relevant outcomes in long-term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study

Author

Klinische Fysica RT, Speerpunt, Zorg en O&O, Cancer, Child Health, SCT patientenzorg, Haematologie patientenzorg, Endocrinologie patientenzorg, Brain, PMC Medisch specialisten, Streefkerk, Nina, Teepen, Jop C., Feijen, Elizabeth A.M., Jóźwiak, Katarzyna, van der Pal, Helena J.H., Ronckers, Cecile M., De Vries, Andrica C.H., Van der Heiden-van Der Loo, Margriet, Hollema, Nynke, van den Berg, Marleen, Loonen, Jacqueline, Grootenhuis, Martha A., Bresters, Dorine, Versluys, A. Brigitta, van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van Leeuwen, Flora E., Neggers, Sebastian J.C.M.M., Van Santen, Hanneke M., Hawkins, Mike, Hauptmann, Michael, Yoneoka, Daisuke, Korevaar, Joke C., Tissing, Wim J.E., Kremer, Leontien C.M., Klinische Fysica RT, Speerpunt, Zorg en O&O, Cancer, Child Health, SCT patientenzorg, Haematologie patientenzorg, Endocrinologie patientenzorg, Brain, PMC Medisch specialisten, Streefkerk, Nina, Teepen, Jop C., Feijen, Elizabeth A.M., Jóźwiak, Katarzyna, van der Pal, Helena J.H., Ronckers, Cecile M., De Vries, Andrica C.H., Van der Heiden-van Der Loo, Margriet, Hollema, Nynke, van den Berg, Marleen, Loonen, Jacqueline, Grootenhuis, Martha A., Bresters, Dorine, Versluys, A. Brigitta, van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van Leeuwen, Flora E., Neggers, Sebastian J.C.M.M., Van Santen, Hanneke M., Hawkins, Mike, Hauptmann, Michael, Yoneoka, Daisuke, Korevaar, Joke C., Tissing, Wim J.E., and Kremer, Leontien C.M.

Published
2024

27. Differences in checkpointinhibitor- induced hypophysitis: mono- versus combination therapy induced hypophysitis.

Author

van der Leij, Stephanie, Suijkerbuijk, Karijn P. M., den Broek, Medard F. M. van, Valk, Gerlof D., Dankbaa, Jan Willem, and van Santen, Hanneke M.

Subjects
IMMUNE checkpoint inhibitors, FATIGUE (Physiology), SYMPTOMS, CYTOTOXIC T lymphocyte-associated molecule-4, ADRENOCORTICOTROPIC hormone
Abstract

Objective: Immune checkpoint inhibitors (ICIs) are revolutionary in oncology but may cause immune-related (IR) side effects, such as hypophysitis. Treatment with anti-PD-(L)1, anti-CTLA-4 or anti-CLTA-4/PD-1 may induce hypophysitis, but little is known about the differences in clinical presentation or need for different treatment. We analyzed the differences of anti-PD-(L)1, anti-CTLA-4 and anti- CTLA-4/PD-1 induced hypophysitis Methods: retrospective analysis of 67 patients (27 anti-PD-(L)1, 6 anti-CLTA-4 and 34 anti-CTLA-4/PD-1 induced hypophysitis). Results: The median time between starting ICIs and IR-hypophysitis was longer after anti-PD(L)-1) therapy (22 weeks versus 11 and 14 weeks after anti-CTLA-4 and anti-CTLA-4/PD-1 therapy, respectively). The majority of patients (>90%), presented with atypical complaints such as fatigue, nausea, and muscle complaints. Headache, TSH or LH/FSH deficiency were more common in anti- CTLA-4 and anti-CLTA-4/PD-1 versus anti-PD-(L)1 induced hypophysitis (83% and 58% versus 8%, 67% and 41% versus 11%, and 83% and 48% versus 7%, respectively). Pituitary abnormalities on MRI (hypophysitis or secondary empty sella syndrome) were only seen in patients receiving anti-CTLA-4 or anti-CTLA-4/ PD-1 therapy. Recovery from TSH, LH/FSH and ACTH deficiency was described in 92%, 70% and 0% of patients after a mean period of 14 and 104 days, respectively, and did not differ between patients who did or did not receive high-dose steroids. Conclusion: The clinical presentation of IR-hypophysitis varies depending on the type of ICIs. MRI abnormalities were only seen in anti-CTLA-4 or anti-CTLA-4/ PD-1 induced hypophysitis. Endocrine recovery is seen for LH/FSH and TSH deficiency but not for ACTH deficiency, irrespective of the corticosteroid dose. [ABSTRACT FROM AUTHOR]

Published
2024
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35. Preface

Author

Brignardello, Enrico, primary, Felicetti, Francesco, additional, and van Santen, Hanneke M., additional

Published
2021
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36. The cumulative burden of self‐reported, clinically relevant outcomes in long‐term childhood cancer survivors and implications for survivorship care: A DCCSS LATER study.

Author

Streefkerk, Nina, Teepen, Jop C., Feijen, Elizabeth A. M., Jóźwiak, Katarzyna, van der Pal, Helena J. H., Ronckers, Cecile M., De Vries, Andrica C. H., Van der Heiden‐van Der Loo, Margriet, Hollema, Nynke, van den Berg, Marleen, Loonen, Jacqueline, Grootenhuis, Martha A., Bresters, Dorine, Versluys, A. Brigitta, van Dulmen‐den Broeder, Eline, van den Heuvel‐Eibrink, Marry M., van Leeuwen, Flora E., Neggers, Sebastian J. C. M. M., Van Santen, Hanneke M., and Hawkins, Mike

Subjects
CHILDHOOD cancer, CANCER survivors, MISSING data (Statistics), TUMOR treatment, CONFIDENCE intervals
Abstract

Background: The aim of this study is to evaluate how cumulative burden of clinically relevant, self‐reported outcomes in childhood cancer survivors (CCSs) compares to a sibling control group and to explore how the burden corresponds to levels of care proposed by existing risk stratifications. Methods: The authors invited 5925 5‐year survivors from the Dutch Childhood Cancer Survivor Study (DCCSS LATER) cohort and their 1066 siblings to complete a questionnaire on health outcomes. Health outcomes were validated by self‐reported medication use or medical record review. Missing data on clinically relevant outcomes in CCSs for whom no questionnaire data were available were imputed with predictive mean matching. We calculated the mean cumulative count (MCC) for clinically relevant outcomes. Furthermore, we calculated 30‐year MCC for groups of CCSs based on primary cancer diagnosis and treatment, ranked 30‐year MCC, and compared the ranking to levels of care according to existing risk stratifications. Results: At median 18.5 years after 5‐year survival, 46% of CCSs had at least one clinically relevant outcome. CCSs experienced 2.8 times more health conditions than siblings (30‐year MCC = 0.79; 95% confidence interval [CI], 0.74–0.85 vs. 30‐year MCC = 0.29; 95% CI, 0.25–0.34). CCSs' burden of clinically relevant outcomes consisted mainly of endocrine and vascular conditions and varied by primary cancer type. The ranking of the 30‐year MCC often did not correspond with levels of care in existing risk stratifications. Conclusions: CCSs experience a high cumulative burden of clinically relevant outcomes that was not completely reflected by current risk stratifications. Choices for survivorship care should extend beyond primary tumor and treatment parameters, and should consider also including CCSs' current morbidity. Survivors of childhood cancer experience a high cumulative burden of clinically relevant outcomes. Choices for survivorship care should extend beyond primary tumor and treatment parameters and should also consider including the current morbidity of childhood cancer survivors. [ABSTRACT FROM AUTHOR]

Published
2024
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38. Elevated IGF‐1 concentrations in children with low grade glioma: A descriptive analysis in a retrospective national cohort

Author

van Schaik, Jiska, primary, van Roessel, Ichelle M. A. A., additional, Bos, Iris D., additional, Claashen‐van der Grinten, Hedi L., additional, Clement, Sarah C., additional, van Iersel, Laura, additional, Bakker, Boudewijn, additional, Meijer, Lisethe, additional, Kremer, Leontien, additional, Schouten‐van Meeteren, A. Y. Netteke, additional, and van Santen, Hanneke M., additional

Published
2023
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39. Recommendations for gonadotoxicity surveillance in male childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium

Author

Skinner, Roderick, Mulder, Renee L, Kremer, Leontien C, Hudson, Melissa M, Constine, Louis S, Bardi, Edit, Boekhout, Annelies, Borgmann-Staudt, Anja, Brown, Morven C, Cohn, Richard, Dirksen, Uta, Giwercman, Alexsander, Ishiguro, Hiroyuki, Jahnukainen, Kirsi, Kenney, Lisa B, Loonen, Jacqueline J, Meacham, Lilian, Neggers, Sebastian, Nussey, Stephen, Petersen, Cecilia, Shnorhavorian, Margarett, van den Heuvel-Eibrink, Marry M, van Santen, Hanneke M, Wallace, William H B, and Green, Daniel M

Published
2017
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41. Frailty and sarcopenia within the earliest national Dutch childhood cancer survivor cohort (DCCSS-LATER): a cross-sectional study

Author

van Atteveld, Jenneke E, primary, de Winter, Demi T C, additional, Pluimakers, Vincent G, additional, Fiocco, Marta, additional, Nievelstein, Rutger A J, additional, Hobbelink, Monique G G, additional, Kremer, Leontien C M, additional, Grootenhuis, Martha A, additional, Maurice-Stam, Heleen, additional, Tissing, Wim J E, additional, de Vries, Andrica C H, additional, Loonen, Jacqueline J, additional, van Dulmen-den Broeder, Eline, additional, van der Pal, Helena J H, additional, Pluijm, Saskia M F, additional, van der Heiden-van der Loo, Margriet, additional, Versluijs, A Birgitta, additional, Louwerens, Marloes, additional, Bresters, Dorine, additional, van Santen, Hanneke M, additional, Hoefer, Imo, additional, van den Berg, Sjoerd A A, additional, den Hartogh, Jaap, additional, Hoeijmakers, Jan H J, additional, Neggers, Sebastian J C M M, additional, and van den Heuvel-Eibrink, Marry M, additional

Published
2023
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42. Frailty and sarcopenia within the earliest national Dutch childhood cancer survivor cohort (DCCSS-LATER):a cross-sectional study

Author

van Atteveld, Jenneke E, de Winter, Demi T C, Pluimakers, Vincent G, Fiocco, Marta, Nievelstein, Rutger A J, Hobbelink, Monique G G, Kremer, Leontien C M, Grootenhuis, Martha A, Maurice-Stam, Heleen, Tissing, Wim J E, de Vries, Andrica C H, Loonen, Jacqueline J, van Dulmen-den Broeder, Eline, van der Pal, Helena J H, Pluijm, Saskia M F, van der Heiden-van der Loo, Margriet, Versluijs, A Birgitta, Louwerens, Marloes, Bresters, Dorine, van Santen, Hanneke M, Hoefer, Imo, van den Berg, Sjoerd A A, den Hartogh, Jaap, Hoeijmakers, Jan H J, Neggers, Sebastian J C M M, van den Heuvel-Eibrink, Marry M, van Atteveld, Jenneke E, de Winter, Demi T C, Pluimakers, Vincent G, Fiocco, Marta, Nievelstein, Rutger A J, Hobbelink, Monique G G, Kremer, Leontien C M, Grootenhuis, Martha A, Maurice-Stam, Heleen, Tissing, Wim J E, de Vries, Andrica C H, Loonen, Jacqueline J, van Dulmen-den Broeder, Eline, van der Pal, Helena J H, Pluijm, Saskia M F, van der Heiden-van der Loo, Margriet, Versluijs, A Birgitta, Louwerens, Marloes, Bresters, Dorine, van Santen, Hanneke M, Hoefer, Imo, van den Berg, Sjoerd A A, den Hartogh, Jaap, Hoeijmakers, Jan H J, Neggers, Sebastian J C M M, and van den Heuvel-Eibrink, Marry M

Abstract

BACKGROUND: Childhood cancer survivors appear to be at increased risk of frailty and sarcopenia, but evidence on the occurrence of and high-risk groups for these aging phenotypes is scarce, especially in European survivors. The aim of this cross-sectional study was to assess the prevalence of and explore risk factors for pre-frailty, frailty, and sarcopenia in a national cohort of Dutch childhood cancer survivors diagnosed between 1963 and 2001.METHODS: Eligible individuals (alive at the time of study, living in the Netherlands, age 18-45 years, and had not previously declined to participate in a late-effects study) from the Dutch Childhood Cancer Survivor Study (DCCSS-LATER) cohort were invited to take part in this cross-sectional study. We defined pre-frailty and frailty according to modified Fried criteria, and sarcopenia according to the European Working Group on Sarcopenia in Older People 2 definition. Associations between these conditions and demographic and treatment-related as well as endocrine and lifestyle-related factors were estimated with two separate multivariable logistic regression models in survivors with any frailty measurement or complete sarcopenia measurements.FINDINGS: 3996 adult survivors of the DCCSS-LATER cohort were invited to participate in this cross-sectional study. 1993 non-participants were excluded due to lack of response or a decline to participate and 2003 (50·1%) childhood cancer survivors aged 18-45 years were included. 1114 (55·6%) participants had complete frailty measurements and 1472 (73·5%) participants had complete sarcopenia measurements. Mean age at participation was 33·1 years (SD 7·2). 1037 (51·8%) participants were male, 966 (48·2%) were female, and none were transgender. In survivors with complete frailty measurements or complete sarcopenia measurements, the percentage of pre-frailty was 20·3% (95% CI 18·0-22·7), frailty was 7·4% (6·0-9·0), and sarcopenia was 4·4% (3·5-5·6). In the models for pre-frai

Published
2023

43. Clinical evaluation of late outcomes in Dutch childhood cancer survivors:Methodology of the DCCSS LATER 2 study

Author

Feijen, Elizabeth A.M., Teepen, Jop C., van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van der Heiden-van der Loo, Margriet, van der Pal, Helena J.H., de Vries, Andrica C.H., Louwerens, Marloes, Bresters, Dorine, Versluys, Birgitta, de Ridder, Hanneke, Veening, Margreet, van Leeuwen, Flora E., Grootenhuis, Martha, Maurice-Stam, Heleen, van Santen, Hanneke M., Neggers, Sebastian J.C.M.M., Pluijm, Saskia, den Hartogh, Jaap, Ronckers, Cécile M., Tissing, Wim J.E., Loonen, Jacqueline J., Kremer, Leontien C.M., Feijen, Elizabeth A.M., Teepen, Jop C., van Dulmen-den Broeder, Eline, van den Heuvel-Eibrink, Marry M., van der Heiden-van der Loo, Margriet, van der Pal, Helena J.H., de Vries, Andrica C.H., Louwerens, Marloes, Bresters, Dorine, Versluys, Birgitta, de Ridder, Hanneke, Veening, Margreet, van Leeuwen, Flora E., Grootenhuis, Martha, Maurice-Stam, Heleen, van Santen, Hanneke M., Neggers, Sebastian J.C.M.M., Pluijm, Saskia, den Hartogh, Jaap, Ronckers, Cécile M., Tissing, Wim J.E., Loonen, Jacqueline J., and Kremer, Leontien C.M.

Abstract

Background: Childhood cancer survivors face late health problems; despite advances in research, details on risk remain unclear. We describe the methodological aspects of the Dutch Childhood Cancer Survivor Study (DCCSS) cross-sectional clinical study (LATER 2 study). Procedure: From the multi-center DCCSS LATER cohort of 6165 five-year survivors diagnosed during 1963–2001, we invited 4735 eligible survivors in 2016, as well as siblings and parents of survivors. Gaps in evidence identified during development of surveillance guidelines were translated into clinical research questions for 16 outcome-specific subprojects. The regular care visit to the LATER outpatient clinic forms the backbone of outcome assessment complemented with research-defined measurements (physical examination, clinical tests, questionnaires). Furthermore, blood/saliva samples were taken for deoxyribonucleic acid (DNA) extraction. Results: In total, 2519 (53.2%) survivors participated in the LATER 2 study. When comparing participants with nonparticipants, we observed that males, CNS survivors, and those treated with surgery only were less likely to participate. Of the participating survivors, 49.3% were female. Median time since childhood cancer diagnosis was 26.9 years (range 14.8–54.7 years) and median attained age was 34.4 years (range 15.4–66.6 years). Conclusions: The high-quality data generated in the LATER 2 study will provide valuable insights into risks of and risk factors for clinical and physical and psychosocial health outcomes and factors for early recognition of those health outcomes in long-term childhood cancer survivors. This will contribute to fill in important gaps in knowledge and improve the quality of life and care for childhood cancer survivors.

Published
2023

44. Questionnaire- and linkage-based outcomes in Dutch childhood cancer survivors:Methodology of the DCCSS LATER study part 1

Author

Teepen, Jop C., Kok, Judith L., Feijen, Elizabeth A.M., Loonen, Jacqueline J., van den Heuvel-Eibrink, Marry M., van der Pal, Helena J., Tissing, Wim J.E., Bresters, Dorine, Versluys, Birgitta, Grootenhuis, Martha A., Louwerens, Marloes, Neggers, Sebastian J.C.M.M., van Santen, Hanneke M., de Vries, Andrica, Janssens, Geert O., den Hartogh, Jaap G., van Leeuwen, Flora E., Hollema, Nynke, Streefkerk, Nina, Kilsdonk, Ellen, van der Heiden-van der Loo, Margriet, van Dulmen-den Broeder, Eline, Ronckers, Cécile M., Kremer, Leontien C.M., Teepen, Jop C., Kok, Judith L., Feijen, Elizabeth A.M., Loonen, Jacqueline J., van den Heuvel-Eibrink, Marry M., van der Pal, Helena J., Tissing, Wim J.E., Bresters, Dorine, Versluys, Birgitta, Grootenhuis, Martha A., Louwerens, Marloes, Neggers, Sebastian J.C.M.M., van Santen, Hanneke M., de Vries, Andrica, Janssens, Geert O., den Hartogh, Jaap G., van Leeuwen, Flora E., Hollema, Nynke, Streefkerk, Nina, Kilsdonk, Ellen, van der Heiden-van der Loo, Margriet, van Dulmen-den Broeder, Eline, Ronckers, Cécile M., and Kremer, Leontien C.M.

Abstract

Background: Childhood cancer survivors are at risk for developing long-term adverse health outcomes. To identify the risk of and risk factors for specific health outcomes, well-established cohorts are needed with detailed information on childhood cancer diagnosis, treatment, and health outcomes. We describe the design, methodology, characteristics, and data availability of the Dutch Childhood Cancer Survivor Study LATER cohort (1963–2001) part 1; questionnaire and linkage studies. Methods: The LATER cohort includes 5-year childhood cancer survivors, diagnosed in the period 1963–2001, and before the age of 18 in any of the seven former pediatric oncology centers in the Netherlands. Information on health outcomes from survivors and invited siblings of survivors was collected by questionnaires and linkages to medical registries. Results: In total, 6165 survivors were included in the LATER cohort. Extensive data on diagnosis and treatment have been collected. Information on a variety of health outcomes has been ascertained by the LATER questionnaire study and linkages with several registries for subsequent tumors, health care use, and hospitalizations. Conclusion: Research with data of the LATER cohort will provide new insights into risks of and risk factors for long-term health outcomes. This can enhance risk stratification for childhood cancer survivors and inform surveillance guidelines and development of interventions to prevent (the impact of) long-term adverse health outcomes. The data collected will be a solid baseline foundation for future follow-up studies.

Published
2023

46. Pediatric body composition based on automatic segmentation of computed tomography scans: a pilot study

Author

Researchgr. Nucleaire Geneeskunde, Cancer, Arts-assistenten Radiologie, Researchgr. Cardiovasculaire Radiologie, MS Radiologie, Researchgr. Systems Radiology, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, Beeldverwerking ISI, Endocrinologie patientenzorg, Brain, Child Health, Samim, Atia, Spijkers, Suzanne, Moeskops, Pim, Littooij, Annemieke S, de Jong, Pim A, Veldhuis, Wouter B, de Vos, Bob D, van Santen, Hanneke M, Nievelstein, Rutger A J, Researchgr. Nucleaire Geneeskunde, Cancer, Arts-assistenten Radiologie, Researchgr. Cardiovasculaire Radiologie, MS Radiologie, Researchgr. Systems Radiology, Circulatory Health, Infection & Immunity, Regenerative Medicine and Stem Cells, Beeldverwerking ISI, Endocrinologie patientenzorg, Brain, Child Health, Samim, Atia, Spijkers, Suzanne, Moeskops, Pim, Littooij, Annemieke S, de Jong, Pim A, Veldhuis, Wouter B, de Vos, Bob D, van Santen, Hanneke M, and Nievelstein, Rutger A J

Published
2023

47. Tocilizumab for the fifth progression of cystic childhood craniopharyngioma-a case report

Author

MS Radiologie, Circulatory Health, Pathologie, Cancer, Endocrinologie patientenzorg, Brain, Child Health, de Vos-Kerkhof, Evelien, Buis, Dennis R, Lequin, Maarten H, Bennebroek, Carlien A, Aronica, Eleonora, Hulleman, Esther, Zwaveling-Soonawala, Nitash, van Santen, Hanneke M, Schouten-van Meeteren, Antoinette Y N, MS Radiologie, Circulatory Health, Pathologie, Cancer, Endocrinologie patientenzorg, Brain, Child Health, de Vos-Kerkhof, Evelien, Buis, Dennis R, Lequin, Maarten H, Bennebroek, Carlien A, Aronica, Eleonora, Hulleman, Esther, Zwaveling-Soonawala, Nitash, van Santen, Hanneke M, and Schouten-van Meeteren, Antoinette Y N

Published
2023

48. Elevated IGF-1 concentrations in children with low grade glioma: A descriptive analysis in a retrospective national cohort

Author

Endocrinologie onderzoek, Cancer, Child Health, Endocrinologie patientenzorg, Zorg en O&O, Brain, van Schaik, Jiska, van Roessel, Ichelle M A A, Bos, Iris D, Claashen-van der Grinten, Hedi L, Clement, Sarah C, van Iersel, Laura, Bakker, Boudewijn, Meijer, Lisethe, Kremer, Leontien, Schouten-van Meeteren, A Y Netteke, van Santen, Hanneke M, Endocrinologie onderzoek, Cancer, Child Health, Endocrinologie patientenzorg, Zorg en O&O, Brain, van Schaik, Jiska, van Roessel, Ichelle M A A, Bos, Iris D, Claashen-van der Grinten, Hedi L, Clement, Sarah C, van Iersel, Laura, Bakker, Boudewijn, Meijer, Lisethe, Kremer, Leontien, Schouten-van Meeteren, A Y Netteke, and van Santen, Hanneke M

Published
2023

49. Could deep brain stimulation be a possible solution for acquired hypothalamic obesity?

Author

Neurochirurgen, Cancer, Endocrinologie patientenzorg, Brain, Child Health, Dassen, Amber R, van Schaik, Jiska, van den Munckhof, Pepijn, Schuurman, P R, Hoving, Eelco W, van Santen, Hanneke M, Neurochirurgen, Cancer, Endocrinologie patientenzorg, Brain, Child Health, Dassen, Amber R, van Schaik, Jiska, van den Munckhof, Pepijn, Schuurman, P R, Hoving, Eelco W, and van Santen, Hanneke M

Published
2023

50. Hydrocortisone to reduce dexamethasone-induced neurobehavioral side-effects in children with acute lymphoblastic leukaemia—results of a double-blind, randomised controlled trial with cross-over design

Author

Kinderbewegingszorg patientenzorg, Arts-assistenten Kinderen, PMC Research, Speerpunt, Endocrinologie patientenzorg, Brain, Cancer, Child Health, Zorg en O&O, MS Verloskunde, van Hulst, Annelienke M., van den Akker, Erica L.T., Verwaaijen, Emma J., Fiocco, Marta, Rensen, Niki, van Litsenburg, Raphaële R.L., Pluijm, Saskia M.F., Zwaan, C. Michel, van Santen, Hanneke M., Pieters, Rob, Evers, Andrea W.M., Grootenhuis, Martha A., van den Heuvel-Eibrink, Marry M., Kinderbewegingszorg patientenzorg, Arts-assistenten Kinderen, PMC Research, Speerpunt, Endocrinologie patientenzorg, Brain, Cancer, Child Health, Zorg en O&O, MS Verloskunde, van Hulst, Annelienke M., van den Akker, Erica L.T., Verwaaijen, Emma J., Fiocco, Marta, Rensen, Niki, van Litsenburg, Raphaële R.L., Pluijm, Saskia M.F., Zwaan, C. Michel, van Santen, Hanneke M., Pieters, Rob, Evers, Andrea W.M., Grootenhuis, Martha A., and van den Heuvel-Eibrink, Marry M.

Published
2023

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