Questionnaire-assessed genotypes and associations with symptoms in primary ciliary dyskinesia

Autor: Eva S.L. Pedersen, Myrofora Goutaki, Leonie D. Schreck, Bernhard Rindlisbacher, Lucy Dixon, Jane S. Lucas, Claudia E. Kuehni, the COVID-PCD patient advisory group, Sara Bellu, Isabelle Cizeau, Katie Dexter, Trini López Fernández, Susanne Grieder, Catherine Kruljac, Michele Manion, Hansruedi Silberschmidt, Emilie Wattellier

Publikováno v: ERJ Open Research, Vol 10, Iss 5 (2024)

Externí odkaz: https://doaj.org/article/32cbfbcba1ea4c50a691410254657f66

Validation of self-reported cardiovascular problems in childhood cancer survivors by contacting general practitioners: feasibility and results

Autor: Eva-Maria Hau, Tomáš Sláma, Stefan Essig, Gisela Michel, Laura Wengenroth, Eva Bergstraesser, Nicolas X. von der Weid, Christina Schindera, Claudia E. Kuehni

Publikováno v: BMC Primary Care, Vol 25, Iss 1, Pp 1-11 (2024)

Abstract Background Epidemiological studies often rely on self-reported health problems and validation greatly improves study quality. In a study of late effects after childhood cancer, we validated self-reported cardiovascular problems by contacting

Externí odkaz: https://doaj.org/article/25acb7907f6f4ef7aa6c946161204cb2

Prevalence of childhood cancer survivors in Europe: a scoping review

Autor: Neimar de Paula Silva, Andrea Gini, Anastasia Dolya, Murielle Colombet, Isabelle Soerjomataram, Danny Youlden, Charles Stiller, Eva Steliarova-Foucher, Joanne Aitken, Freddie Bray, Friederike Erdmann, Jeanette Falck Winther, Delphine Heenen, Lars Hjorth, Claudia E. Kuehni, Kathy Pritchard-Jones, Marion Piñeros, Zuzana Tomášiková

Publikováno v: EJC Paediatric Oncology, Vol 3, Iss , Pp 100155- (2024)

Childhood cancer survivors (CCS) require specialized follow-up throughout their lifespan to prevent or manage late effects of cancer treatment. Knowing the size and structure of the population of CCS is crucial to plan interventions. In this scoping

Externí odkaz: https://doaj.org/article/eb1ff8045a9840ea9b65784873a523a2

Recommendations for surveillance of pulmonary dysfunction among childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Autor: Maria Otth, Rahel Kasteler, Renée L. Mulder, Jennifer Agrusa, Saro H. Armenian, Dana Barnea, Anne Bergeron, Neel S. Bhatt, Stephen J. Bourke, Louis S. Constine, Myrofora Goutaki, Daniel M. Green, Ulrike Hennewig, Veronique Houdouin, Melissa M. Hudson, Leontien Kremer, Philipp Latzin, Antony Ng, Kevin C. Oeffinger, Christina Schindera, Roderick Skinner, Grit Sommer, Saumini Srinivasan, Dennis C. Stokes, Birgitta Versluys, Nicolas Waespe, Daniel J. Weiner, Andrew C. Dietz, Claudia E. Kuehni

Publikováno v: EClinicalMedicine, Vol 69, Iss , Pp 102487- (2024)

Summary: Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of pulmonary dysfunction. Current follow-up care guidelines are discordant. Therefore, the International Late Effects of Childhood Cancer Guideline Harmonization Grou

Externí odkaz: https://doaj.org/article/88fc428a6f4647b393a14ce0a8083625

Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project – international benchmarking of childhood cancer survival by stage

Autor: Angela Lopez-Cortes, Fabio Didonè, Laura Botta, Lisa L. Hjalgrim, Zsuzsanna Jakab, Adela Cañete Nieto, Charles Stiller, Bernward Zeller, Gemma Gatta, Kathy Pritchard-Jones, The BENCHISTA Project Working Group, Joanne Aitken, Leisa O’Neil, Monika Hack, Ruth Ladenstein, Elizabeth Van Eycken, Nancy Van Damme, Lindsay Frazier, Beatriz De Camargo, Marceli de Oliveira Santos, Zdravka Valerianova, Dobrin Konstantinov, Sumit Gupta, Jason D Pole, Mario Sekerija, Jan Stary, Jaroslav Sterba, Jeanette F Winther, Keiu Paapsi, Brigitte Lacour, Emmanuel Desandes, Jacqueline Clavel, Claire Poulalhon, Friederike Erdmann, Eleni T Petridou, Evdoxia Bouka, Michael Mian, Rocco Galasso, Giuseppe Sampietro, Francesco Vetrano, Milena M Maule, Carlotta Sacerdote, Paola Ballotari, Emilia De Santis, Margherita Ferrante, Rosalia Ragusa, Luca Boni, Magda Rognoni, Rosalba Amodio, Lorenza Boschetti, Francesco Cuccaro, Danila Bruno, Antonio G Russo, Federico Gervasi, Maria L Gambino, Elisabetta Borciani, Maria Michiara, Lucia Mangone, Gianbattista Spagnoli, Stefano Ferretti, Fabio Falcini, Eugenia Spata, Sonia Manasse, Paola Coccia, Francesca Bella, Adele Caldarella, Teresa Intrieri, Tiziana Scuderi, Roberto V Rizzello, Massimo Rugge, Stefano Guzzinati, Deirdre Murray, Tomohiro Matsuda, Kayo Nakata, Miriam J Azzopardi, Aina H Dahlen, Johannesen Tom Børge, Jerzy Kowalczyk, Monika Jedrzejczyk, Gabriela Caldas, Mihaela Bucurenci, Dana Coza, Vesna Zadnik, Arantza Lopez de Munain, Fernando Almela-Vich, Nieves Fuster-Camarena, Ra f a e l Marcos-Gragera, Maria José Sanchez, Nuria Aragones, Raquel Lopez, Maria Dolores Chirlaque, Marcela Guevara, Elena Pardo, Rafael Peris-Bonet, Marià Carulla, Päivi Lähteenmäki, Claudia E Kuehni, Shelagh M Redmond, Henrike Karim-Kos, Paul Stacey, Lucy Irvine, Anna Gavin, Deirdre Fitzpatrick, David S Morrison, Karen Smith, Dyfed Wyn Huws, Janet Warlow, Sandra Strauss, Simon Bailey, Adela Canete Nieto, Nathalie Gaspar, Filippo Spreafico, Angela Polanco, Riccardo Capocaccia, Andrea Di Cataldo, Meric Klein

Publikováno v: Frontiers in Oncology, Vol 13 (2023)

IntroductionVariation in stage at diagnosis of childhood cancers (CC) may explain differences in survival rates observed across geographical regions. The BENCHISTA project aims to understand these differences and to encourage the application of the T

Externí odkaz: https://doaj.org/article/399b6f215939447192dd0aa7bfe6f14a