Article (Scientific journals)
Rationale and design of the peripheral nerve tumor registry: an observational cohort study
Dengler, N.F.; Scholz, C.; Beck, J. et al.
2023In Neurological Research, 45 (1), p. 81 - 85
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Keywords :
neurofibroma; Peripheral nerve tumor; registry; schwannoma; leucine zipper like transcriptional regulator 1; protein; SWI/SNF related matrix associated actin dependent regulator of chromatin subfamily B member 1; unclassified drug; adolescent; Article; cancer registry; child; cohort analysis; computer assisted tomography; female; follow up; human; male; multicenter study; neurologic examination; nuclear magnetic resonance imaging; observational study; peripheral nerve tumor; positron emission tomography; prospective study; quality of life; standardized uptake value; systematic review; tumor volume; clinical trial; Europe; register; retrospective study; Cohort Studies; Humans; Peripheral Nervous System Neoplasms; Registries; Retrospective Studies
Abstract :
[en] Aim: Peripheral nerve tumors (PNT) are rare lesions. To date, no systematic multicenter studies on epidemiology, clinical symptoms, treatment strategies and outcomes, genetic and histopathologic features, as well as imaging characteristics of PNT were published. The main goal of our PNT Registry is the systematic multicenter investigation to improve our understanding of PNT and to assist future interventional studies in establishing hypotheses, determining potential endpoints, and assessing treatment efficacy. Methods: Aims of the PNT registry were set at the 2015 Meeting of the Section of Peripheral Nerve Surgery of the German Society of Neurosurgery. A study protocol was developed by specialists in PNT care. A minimal data set on clinical status, treatment types and outcomes is reported by each participating center at initial contact with the patient and after 1 year, 2 years, and 5 years. Since the study is coordinated by the Charité Berlin, the PNR Registry was approved by the Charité ethics committee (EA4/058/17) and registered with the German Trials Registry (www.drks.de). On a national level, patient inclusion began in June 2016. The registry was rolled out across Europe at the 2019 meeting of the European Association of Neurosurgery in Dublin. Results: Patient recruitment has been initiated at 10 centers throughout Europe and 14 additional centers are currently applying for local ethics approval. Conclusion: To date, the PNT registry has grown into an international study group with regular scientific and clinical exchange awaiting the first results of the retrospective study arm. © 2022 Informa UK Limited, trading as Taylor & Francis Group.
Disciplines :
Surgery
Author, co-author :
Dengler, N.F.;  Department of Neurosurgery, Charité - Universitaetsmedizin Berlin, Charitéplatz 1, Berlin, 10117, Germany
Scholz, C.;  Department of Neurosurgery, Medical Center, Faculty of Medicine, University of Freiburg, Hugstetter Str. 55, Freiburg i.B, 79106, Germany
Beck, J.;  Department of Neurosurgery, Medical Center, Faculty of Medicine, University of Freiburg, Hugstetter Str. 55, Freiburg i.B, 79106, Germany
Uerschels, A.-K.;  Department of Neurosurgery, University Hospital Essen, University of Duisburg-Essen, Hufelandstrasse 55, Essen, 45147, Germany
Sure, U.;  Department of Neurosurgery, University Hospital Essen, University of Duisburg-Essen, Hufelandstrasse 55, Essen, 45147, Germany
Scheller, C.;  Department of Neurosurgery, University of Halle, Ernst-Grube-Str. 40, Halle, 06120, Germany
Strauss, C.;  Department of Neurosurgery, University of Halle, Ernst-Grube-Str. 40, Halle, 06120, Germany
Martin, D.;  Department of Neurosurgery, Technische Universität Dresden, Fetscherstr. 74, Dresden, 01307, Germany
Schackert, G.;  Department of Neurosurgery, Technische Universität Dresden, Fetscherstr. 74, Dresden, 01307, Germany
Heinen, C.;  Department of Neurosurgery, Evangelisches Krankenhaus, Carl von Ossietzky University Oldenburg, Marienstr. 11, Oldenburg, 26121, Germany, Department of Neurosurgery, PeripheralNerveUnit Nord, Christliches Krankenhaus Quakenbrück GmbH, Quakenbrück, Germany
Woitzik, J.;  Department of Neurosurgery, Evangelisches Krankenhaus, Carl von Ossietzky University Oldenburg, Marienstr. 11, Oldenburg, 26121, Germany
McLean, A.L.;  Department of Neurosurgery, HELIOS Klinikum Erfurt, Nordhäuser Str. 74, Erfurt, 99089, Germany
Rosahl, S.K.;  Department of Neurosurgery, HELIOS Klinikum Erfurt, Nordhäuser Str. 74, Erfurt, 99089, Germany
Kolbenschlag, J.;  Department of Hand-, Plastic, Reconstructive, and Burn Surgery, BG Klinik Tübingen, Schnarrenbergstraße 95, Tübingen, 72076, Germany
Heinzel, J.;  Department of Hand-, Plastic, Reconstructive, and Burn Surgery, BG Klinik Tübingen, Schnarrenbergstraße 95, Tübingen, 72076, Germany
Schuhmann, M.;  Department of Neurosurgery, Universitätsklinikum Tübingen, Hippe-Seyler-Straße 3, Tübingen, 72076, Germany
Tatagiba, M.S.;  Department of Neurosurgery, Universitätsklinikum Tübingen, Hippe-Seyler-Straße 3, Tübingen, 72076, Germany
Guerra, W.K.-W.;  Department of Neurosurgery, University Medicine Greifswald, Sauerbruchstr. 1, Greifswald, 17475, Germany
Schroeder, H.W.S.;  Department of Neurosurgery, University Medicine Greifswald, Sauerbruchstr. 1, Greifswald, 17475, Germany
Vetrano, I.G.;  Department of Neurosurgery, Fondazione I.R.C.C.S Istituto Neurologico Carlo Besta, Via Giovanni Celoria 11, Milano, 20133, Italy
Ahmadi, R.;  Department of Neurosurgery, Heidelberg University Hospital, Berlin, Germany
Unterberg, A.;  Department of Neurosurgery, Heidelberg University Hospital, Berlin, Germany
Reinsch, J.;  Department of Neurosurgery, Charité - Universitaetsmedizin Berlin, Charitéplatz 1, Berlin, 10117, Germany
Zdunczyk, A.;  Department of Neurosurgery, Charité - Universitaetsmedizin Berlin, Charitéplatz 1, Berlin, 10117, Germany
Unteroberdoerster, M.;  Department of Neurosurgery, Charité - Universitaetsmedizin Berlin, Charitéplatz 1, Berlin, 10117, Germany
Vajkoczy, P.;  Department of Neurosurgery, Charité - Universitaetsmedizin Berlin, Charitéplatz 1, Berlin, 10117, Germany
Wehner, S.;  Department of Plastic, Reconstructive, and Hand Surgery, Burn Center, University Hospital RWTH Aachen, Aachen, Germany
Becker, M.;  Department of Plastic, Reconstructive, and Hand Surgery, Burn Center, University Hospital RWTH Aachen, Aachen, Germany
Matthies, C.;  Department of Neurosurgery, Würzburg University Hospital, Würzburg, Germany
Pérez-Tejón, J.;  Department of Neurosurgery, Würzburg University Hospital, Würzburg, Germany
Dubuisson, Annie ;  Centre Hospitalier Universitaire de Liège - CHU > > Service de neurochirurgie
Barrone, D.G.;  Department of Clinical Neurosciences, University of Cambridge, School of Clinical Medicine, Cambridge, United Kingdom
Trivedi, R.;  Department of Clinical Neurosciences, University of Cambridge, School of Clinical Medicine, Cambridge, United Kingdom
Capone, C.;  Division of Neurosurgery, Department of Neurosciences, Reproductive and Odontostomatological Sciences, School of Medicine and Surgery, University Napoli „Frederico II“, Naples, Italy
Ferraresi, S.;  Department of Neurosurgery, Ospedale Santa Maria della Misericordia, Rovigo, Italy
Kraschl, J.;  Department of Neurosurgery and Neurorestoration, Klinikum Klagenfurt Am Wörthersee, Klagenfurt, Austria
Kretschmer, T.;  Department of Neurosurgery and Neurorestoration, Klinikum Klagenfurt Am Wörthersee, Klagenfurt, Austria
Dombert, T.;  Center for Peripheral Neurosurgery, Dossenheim, Germany
Staub, F.;  Center for Peripheral Neurosurgery, Dossenheim, Germany
Ronellenfitsch, M.;  Dr. Senckenberg Institute of Neurooncology, University Hospital Frankfurt, Goethe University, Schleusenweg, Frankfurt am Main, Germany
Marquardt, G.;  Department of Neurosurgery, University Hospital Frankfurt, Goethe University, Siegen, Germany
Prinz, V.;  Department of Neurosurgery, University Hospital Frankfurt, Goethe University, Siegen, Germany
Czabanka, M.;  Department of Neurosurgery, University Hospital Frankfurt, Goethe University, Siegen, Germany
Carolus, A.;  Department of Neurosurgery, Diakonie Klinikum Jung-Stilling-Krankenhaus Neurochriurgische Klinik, Siegen, Germany
Braun, V.;  Department of Neurosurgery, Diakonie Klinikum Jung-Stilling-Krankenhaus Neurochriurgische Klinik, Siegen, Germany
König, R.;  Peripheral Nerve Surgery Unit, Department of Neurosurgery, Ulm University, District Hospital, Günzburg, Germany
Antoniadis, G.;  Peripheral Nerve Surgery Unit, Department of Neurosurgery, Ulm University, District Hospital, Günzburg, Germany
Wirtz, C.R.;  Peripheral Nerve Surgery Unit, Department of Neurosurgery, Ulm University, District Hospital, Günzburg, Germany
Rasulic, L.;  Faculty of Medicine, University of Belgrade, Belgrade, Serbia, Clinic for Neurosurgery, Clinical Center of Serbia, Belgrade, Serbia
Pedro, M.T.;  Peripheral Nerve Surgery Unit, Department of Neurosurgery, Ulm University, District Hospital, Günzburg, Germany
More authors (40 more) Less
Language :
English
Title :
Rationale and design of the peripheral nerve tumor registry: an observational cohort study
Publication date :
2023
Journal title :
Neurological Research
ISSN :
0161-6412
eISSN :
1743-1328
Publisher :
Taylor and Francis Ltd.
Volume :
45
Issue :
1
Pages :
81 - 85
Peer reviewed :
Peer Reviewed verified by ORBi
Funding text :
This work was supported by the Charité–Universitätsmedizin Berlin [Rahel Hirsch scholarship]. We would like to thank all participating investigators for providing data for this study in spite of their demanding clinical schedules.
Available on ORBi :
since 08 June 2023

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