The impact of incomplete registration on survival rate of children with very rare tumors

Autor: Jelena Rascon, Lukas Salasevicius, Giedre Rutkauskiene, Ewa Bien, Ieva Vincerzevskiene

Publikováno v: Scientific Reports, Vol 11, Iss 1, Pp 1-9 (2021)

Abstract Pediatric very rare tumors (VRTs) represent a heterogeneous subset of childhood cancers, with reliable survival estimates depending dramatically on each (un)registered case. The current study aimed to evaluate the number of VRTs among Lithua

Externí odkaz: https://doaj.org/article/edaa2737303f4bc8b4d11496fc81ba46

Postoperative speech impairment and surgical approach to posterior fossa tumours in children: a prospective European multicentre cohort study

Autor: Jonathan Kjær Grønbæk, Morten Wibroe, Sebastian Toescu, Radek Frič, Birthe Lykke Thomsen, Lisbeth Nørgaard Møller, Pernilla Grillner, Bengt Gustavsson, Conor Mallucci, Kristian Aquilina, Greg Adam Fellows, Emanuela Molinari, Magnus Aasved Hjort, Mia Westerholm-Ormio, Rosita Kiudeliene, Katalin Mudra, Peter Hauser, Kirsten van Baarsen, Eelco Hoving, Julian Zipfel, Karsten Nysom, Kjeld Schmiegelow, Astrid Sehested, Marianne Juhler, René Mathiasen, Mimi Kjærsgaard, Lars Bøgeskov, Jane Skjøth-Rasmussen, John Hauerberg Tamm, Lars Poulsgaard, Thora Gudrunardottir, Sylvester Kløcker Grønbæk, Alberte Blichfeldt, Felix Nicolai Raben-Levetzau, Michael Thude Callesen, Mathias Rathe, Rikke Bassø Klokker, Gorm von Oettingen, Torben Mikkelsen, Louise Tram Henriksen, Søren Cortnum, Kamilla Tofting-Olesen, Atte Karppinen, Kristin Solem, Ingrid Kristin Torsvik, Ann-Karin Mosand, Line Rapp Simonsen, Christoffer Ehrstedt, Ingela Kristiansen, Karin Fritzson, Line Balestrand Haga, Hege Kristine Fagerholt, Helene Stømqvist Blixt, Hanna Sundgren, Yvonne Håkansson, Charlotte Castor, Per Nyman, Anne Wretman, Pelle Nilsson, Ann-Christin Bjørklund, Magnus Sabel, Inga-Lill Haij, Frans Nilsson, Hanna Olausson, Claire Cummings, Jade Flemming, Deborah Afolabi, Kim Phipps, Ian Kamaly, Sharon Williams, Noor-ul-Owase Jeelani, Donald McArthur, Elisabeth Wiles, David Walker, Rebecca Cooper, Greg Fellows, Lizzy Hoole, Kirsty Slater, Jothy Kandasamy, Rachel McAndrew, Katie McLaughlin, Martin Schumann, Shivaram Avula, Barry Pizer, Giedre Rutkauskiene, Algimantas Matukevicius, Leonie van den Abbeele, Balázs Markia, Beatrix Pálmafy, Niels Clausen, Karen Margrethe Ottosen Møller, Harald Thomassen, Johan Cappelen, Einar Stensvold, Irene Devennay, Tuula Lønnqvist, Kristiina Nordfors, Päivi Lähteenmäki

Publikováno v: Grønbæk, J K, Wibroe, M, Toescu, S, Frič, R, Thomsen, B L, Møller, L N, Grillner, P, Gustavsson, B, Mallucci, C, Aquilina, K, Fellows, G A, Molinari, E, Hjort, M A, Westerholm-Ormio, M, Kiudeliene, R, Mudra, K, Hauser, P, van Baarsen, K, Hoving, E, Zipfel, J, Nysom, K, Schmiegelow, K, Sehested, A, Juhler, M, Mathiasen, R & CMS study group 2021, ' Postoperative speech impairment and surgical approach to posterior fossa tumours in children : a prospective European multicentre cohort study ', The Lancet Child & Adolecent Health, vol. 5, no. 11, pp. 814-824 . https://doi.org/10.1016/S2352-4642(21)00274-1

BACKGROUND: Brain tumours are the most common solid tumours in childhood. Half of these tumours occur in the posterior fossa, where surgical removal is complicated by the risk of cerebellar mutism syndrome, of which postoperative speech impairment (P

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f39d0bf1ff07fc05a17d56a26d861a37
https://pubmed.ncbi.nlm.nih.gov/34624241

The impact of incomplete registration on survival rate of children with very rare tumors

Autor: Jelena Rascon, Lukas Salasevicius, Giedre Rutkauskiene, Ieva Vincerzevskiene

Background. Pediatric very rare tumors (VRTs) represent a heterogeneous subset of childhood cancers, with reliable survival estimates depending dramatically on each (un)registered case. The current study aimed to evaluate the number of VRTs among Lit

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::0e1598cddc0fc572dd0b07ff7a90469d
https://doi.org/10.21203/rs.2.18881/v2

Diagnostics and treatment of diffuse intrinsic pontine glioma : where do we stand?

Autor: Halldora K. Thorarinsdottir, Geert O. Janssens, Ella Kumirova, Sophie E. M. Veldhuijzen van Zanten, Ulrich W. Thomale, Ingrid Torsvik, Virve Pentikäinen, Victor Calvagna, N. Harry Hendrikse, Giedre Rutkauskiene, Veronica Biassoni, Dannis G. van Vuurden, Vicente Santa-Maria Lopez, Fatma E El-Khouly, Maria Joao Gil-da-Costa, Stefan Holm, Simon Bailey, Kaie Pruunsild, Monika Drogosiewicz, Ofelia Cruz-Martinez, Jacques Grill, Gertjan J.L. Kaspers, Maura Massimino, David Sumerauer, Jane Pears, Peter Hauser, Lidija Kitanovski, G. Loizos, Christof M. Kramm, André O. von Bueren, Natacha Entz-Werle, Monica Dragomir, Antonis Kattamis, Karsten Nysom, Tim Hayden, Ladislav Deak, Irene Slavc, Rejin Kebudi, Sandra Jacobs, Enrique López Aguilar, Filip Jadrijevic-Cvrlje

Publikováno v: Journal of Neuro-Oncology, 145(1), 177. Kluwer Academic Publishers
Journal of Neuro-Oncology
Journal of Neuro-Oncology, 145(1), 177-184. Kluwer Academic Publishers
el-Khouly, F E, Veldhuijzen van Zanten, S E M, Santa-Maria Lopez, V, Hendrikse, N H, Kaspers, G J L, Loizos, G, Sumerauer, D, Nysom, K, Pruunsild, K, Pentikainen, V, Thorarinsdottir, H K, Rutkauskiene, G, Calvagna, V, Drogosiewicz, M, Dragomir, M, Deak, L, Kitanovski, L, von Bueren, A O, Kebudi, R, Slavc, I, Jacobs, S, Jadrijevic-Cvrlje, F, Entz-Werle, N, Grill, J, Kattamis, A, Hauser, P, Pears, J, Biassoni, V, Massimino, M, Lopez Aguilar, E, Torsvik, I K, Joao Gil-da-Costa, M, Kumirova, E, Cruz-Martinez, O, Holm, S, Bailey, S, Hayden, T, Thomale, U W, Janssens, G O R, Kramm, C M & van Vuurden, D G 2019, ' Diagnostics and treatment of diffuse intrinsic pontine glioma : where do we stand? ', Journal of Neuro-Oncology, vol. 145, no. 1, pp. 177-184 . https://doi.org/10.1007/s11060-019-03287-9, https://doi.org/10.1007/s11060-019-03287-9
Journal of neuro-oncology, Vol. 145, No 1 (2019) pp. 177-184

Introduction Diffuse intrinsic pontine glioma (DIPG) is a rare clinically, neuro-radiologically, and molecularly defined malignancy of the brainstem with a median overall survival of approximately 11 months. Our aim is to evaluate the current tendenc

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::56c4a1c7159536c1bc0c8d610250afc1
https://dspace.library.uu.nl/handle/1874/391428

Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease

Autor: Marion Hoffmann, Stefan Holm, Simon Bailey, Monika Warmuth-Metz, Brigitte Bison, Jan A. Lieverst, Dannis G. van Vuurden, Marta Zapata-Tarres, Joshua J Baugh, Geert O. Janssens, Esther Sanchez Aliaga, Marta Perek-Polnik, Maria Joao Gil-da-Costa, Jane Pears, Pascale Varlet, Lidija Kitanovski, Andres Morales La Madrid, Maura Massimino, Dominik Sturm, Niclas Colditz, Jet Van Dijk, Sanna-Maria Kivivuori, Enrique López-Aguilar, Johan Noltes, Tim Hayden, Géraldine Giraud, Olga Zheludkova, Sophie E. M. Veldhuijzen van Zanten, Peter Hauser, Nicolas U. Gerber, Frederik Barkhof, Raphael Calmon, Halldora K. Thorarinsdottir, Darren Hargrave, Virve Pentikäinen, Gertjan J.L. Kaspers, John Emmerik, Brooklyn Chaney, Esther Hulleman, David T.W. Jones, Ingrid Torsvik, Veronica Biassoni, Natasha Entz-Werle, Antonis Kattamis, André O. von Bueren, Ruben De Wolf, William P. Vandertop, Stefaan Van Gool, Gerrit H. Gielen, Karsten Nysom, Dennis De Jongh, Antonio Cannarozzo, David Sumerauer, Chris Jones, Ladislav Deak, Maryam Fouladi, Rejin Kebudi, Giedre Rutkauskiene, Sandra Jacobs, David Castel, Ofelia Cruz, Lorenza Gandola, Christof M. Kramm, P. Leblond, Carin M. Damen-Korbijn, Liudmila Shats, Filip Jadrijevic-Cvrlje, Richard Grundy, Miklós Garami, Irene Slavc, Jacques Grill

Publikováno v: Journal of Neuro-Oncology, Vol. 132, No 2 (2017) pp. 255-266
JOURNAL OF NEURO-ONCOLOGY
r-FSJD: Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
Fundació Sant Joan de Déu
Journal of Neuro-Oncology, 132(2), 255. Kluwer Academic Publishers
Journal of Neuro-Oncology, 132(2), 255-266. Kluwer Academic Publishers
Veldhuijzen van Zanten, S E M, Baugh, J, Chaney, B, De Jongh, D, Sanchez Aliaga, E, Barkhof, F, Noltes, J, De Wolf, R, Van Dijk, J, Cannarozzo, A, Damen-Korbijn, C M, Lieverst, J A, Colditz, N, Hoffmann, M, Warmuth-Metz, M, Bison, B, Jones, D T W, Sturm, D, Gielen, G H, Jones, C, Hulleman, E, Calmon, R, Castel, D, Varlet, P, Giraud, G, Slavc, I, Van Gool, S, Jacobs, S, Jadrijevic-Cvrlje, F, Sumerauer, D, Nysom, K, Pentikainen, V, Kivivuori, S M, Leblond, P, Entz-Werle, N, von Bueren, A O, Kattamis, A, Hargrave, D R, Hauser, P, Garami, M, Thorarinsdottir, H K, Pears, J, Gandola, L, Rutkauskiene, G, Janssens, G O, Torsvik, I K, Perek-Polnik, M, Vandertop, W P, Kaspers, G J L, van Vuurden, D G & on behalf of the members of the SIOPE DIPG Network 2017, ' Development of the SIOPE DIPG network, registry and imaging repository : a collaborative effort to optimize research into a rare and lethal disease ', Journal of Neuro-Oncology, vol. 132, no. 2, pp. 255-266 . https://doi.org/10.1007/s11060-016-2363-y
Journal of neuro-oncology, 132(2), 255-266. Kluwer Academic Publishers
Journal of Neuro-Oncology
r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu
instname

Diffuse intrinsic pontine glioma (DIPG) is a rare and deadly childhood malignancy. After 40 years of mostly single-center, often non-randomized trials with variable patient inclusions, there has been no improvement in survival. It is therefore time f

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::7bb18d24465018fc493fb5ac79331033
https://archive-ouverte.unige.ch/unige:107415