Neurofibromatose Typ 1: Vorsorgebogen für Kinder und Jugendliche in Österreich: Konsensuspapier des österreichischen NF-Netzwerks

Amedeo A. Azizi; Alicia-Christina Baumgartner; Markus Seidel; Joachim Zobel; Georg Ebetsberger-Dachs; Herta Zellner; Christian Rauscher; Robert Birnbacher; Ursula Pichler; Edda Haberlandt; Cora Hedrich; Anna Sophie Berghoff; Robert W Gruber; Tobias Welponer; Markus Hutterer; Kerstin Krottendorfer; Thomas Pletschko; Claas Röhl; AG für Pädiatrische Hämato-Onkologie (AGPHO); AG für Neuropädiatrie der Österreichischen Gesellschaft für Kinder- und Jugendheilkunde (ÖGKJ)

doi:10.1007/s00112-024-01955-3

Neurofibromatose Typ 1: Vorsorgebogen für Kinder und Jugendliche in Österreich: Konsensuspapier des österreichischen NF-Netzwerks

Amedeo A. Azizi, Alicia-Christina Baumgartner, Markus Seidel, Joachim Zobel, Georg Ebetsberger-Dachs, Herta Zellner, Christian Rauscher (Co-Autor/-in), Robert Birnbacher, Ursula Pichler, Edda Haberlandt, Cora Hedrich, Anna Sophie Berghoff, Robert W Gruber, Tobias Welponer (Co-Autor/-in), Markus Hutterer, Kerstin Krottendorfer, Thomas Pletschko, Claas Röhl, AG für Pädiatrische Hämato-Onkologie (AGPHO), AG für Neuropädiatrie der Österreichischen Gesellschaft für Kinder- und Jugendheilkunde (ÖGKJ)

Publikation: Beitrag in Fachzeitschrift › Übersichtsarbeit › Begutachtung

1 Quellenangabe (Web of Science)

Abstract

Background
Neurofibromatosis type 1 (NF1) manifests in childhood with a variety of potential symptoms. Besides the development of tumours (primarily but not exclusively in the nervous system), orthopaedic, neurocognitive/educational and psychosocial aspects are particularly important.

Objective
In Austria clear guidelines for the care of children and adolescents with NF1 were lacking. The development of a form for prevention and care should facilitate a standardised approach.

Methodology
The Austrian NF network was established in 2021 and is comprised of experts as well as members of the patient association NF Kinder, reached a consensus through repeated discussions regarding the optimal preventive care for children and adolescents with NF1. The form is designed for healthcare professionals who provide care and treatment for individuals with NF1.

Results
The paediatric prevention and care form is divided into the sections clinical examination/laboratory/radiology and referral. It precisely indicates when and which investigations or controls are considered advisable or recommended.

Conclusion
The development of this form for paediatric prevention and care in NF1 represents a significant step in standardising the care for children and adolescents with NF1 in Austria. With its clear structure and practical recommendations, it aims to facilitate more effective management and early detection of relevant health aspects.

Titel in Übersetzung	Neurofibromatosis type 1: screening form for children and adolescents in Austria: Consensus paper of the Austrian NF network
Originalsprache	Deutsch
Seitenumfang	8
Fachzeitschrift	Monatsschrift Kinderheilkunde
Frühes Online-Datum	16 Apr. 2024
DOIs	https://doi.org/10.1007/s00112-024-01955-3
Publikationsstatus	Veröffentlicht - 16 Apr. 2024

Schlagwörter

Interdisciplinary care
NF1
National recommendations
Prevention
Screening
Standardised care

Zugriff auf Dokument

10.1007/s00112-024-01955-3

Andere Dateien und Links

Datensatz in Web of Science anzeigen

1 Zitationen
1 Korrektur

Neurofibromatosis type 1: Precautionary questionnaire for children and adolescents in Austria (Apr, 10.1007/s00112-024-01955-3, 2024)
Azizi, A. A., Baumgartner, A.-C., Seidel, M., Zobel, J., Ebetsberger-Dachs, G., Zellner, H., Rauscher, C. (Co-Autor/-in), Birnbacher, R., Pichler, U., Haberlandt, E., Hedrich, C., Berghoff, A. S., Gruber, R. W. (Co-Autor/-in), Welponer, T. (Co-Autor/-in), Hutterer, M., Krottendorfer, K., Pletschko, T. & Roehl, C., 7 Mai 2024, in: Monatsschrift Kinderheilkunde. 2 S.
Publikation: Beitrag in Fachzeitschrift › Korrektur › Begutachtung

Dieses zitieren

Azizi, A. A., Baumgartner, A.-C., Seidel, M., Zobel, J., Ebetsberger-Dachs, G., Zellner, H., Rauscher, C., Birnbacher, R., Pichler, U., Haberlandt, E., Hedrich, C., Berghoff, A. S., Gruber, R. W., Welponer, T., Hutterer, M., Krottendorfer, K., Pletschko, T., Röhl, C., AG für Pädiatrische Hämato-Onkologie (AGPHO), & AG für Neuropädiatrie der Österreichischen Gesellschaft für Kinder- und Jugendheilkunde (ÖGKJ) (2024). Neurofibromatose Typ 1: Vorsorgebogen für Kinder und Jugendliche in Österreich: Konsensuspapier des österreichischen NF-Netzwerks. Monatsschrift Kinderheilkunde. https://doi.org/10.1007/s00112-024-01955-3

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title = "Neurofibromatose Typ 1: Vorsorgebogen f{\"u}r Kinder und Jugendliche in {\"O}sterreich: Konsensuspapier des {\"o}sterreichischen NF-Netzwerks",

abstract = "BackgroundNeurofibromatosis type 1 (NF1) manifests in childhood with a variety of potential symptoms. Besides the development of tumours (primarily but not exclusively in the nervous system), orthopaedic, neurocognitive/educational and psychosocial aspects are particularly important.ObjectiveIn Austria clear guidelines for the care of children and adolescents with NF1 were lacking. The development of a form for prevention and care should facilitate a standardised approach.MethodologyThe Austrian NF network was established in 2021 and is comprised of experts as well as members of the patient association NF Kinder, reached a consensus through repeated discussions regarding the optimal preventive care for children and adolescents with NF1. The form is designed for healthcare professionals who provide care and treatment for individuals with NF1.ResultsThe paediatric prevention and care form is divided into the sections clinical examination/laboratory/radiology and referral. It precisely indicates when and which investigations or controls are considered advisable or recommended.ConclusionThe development of this form for paediatric prevention and care in NF1 represents a significant step in standardising the care for children and adolescents with NF1 in Austria. With its clear structure and practical recommendations, it aims to facilitate more effective management and early detection of relevant health aspects.",

keywords = "Interdisciplinary care, NF1, National recommendations, Prevention, Screening, Standardised care",

author = "Azizi, {Amedeo A.} and Alicia-Christina Baumgartner and Markus Seidel and Joachim Zobel and Georg Ebetsberger-Dachs and Herta Zellner and Christian Rauscher and Robert Birnbacher and Ursula Pichler and Edda Haberlandt and Cora Hedrich and Berghoff, {Anna Sophie} and Gruber, {Robert W} and Tobias Welponer and Markus Hutterer and Kerstin Krottendorfer and Thomas Pletschko and Claas R{\"o}hl and {AG f{\"u}r P{\"a}diatrische H{\"a}mato-Onkologie (AGPHO)} and {AG f{\"u}r Neurop{\"a}diatrie der {\"O}sterreichischen Gesellschaft f{\"u}r Kinder- und Jugendheilkunde ({\"O}GKJ)}",

note = "Rauscher: Universit{\"a}tsklinik f{\"u}r Kinder- und Jugendheilkunde, Uniklinikum der Paracelsus Medizinischen Universit{\"a}t, Salzburg, {\"O}sterreich; Welponer: Universit{\"a}tsklinik f{\"u}r Dermatologie und Allergologie, Uniklinikum der Paracelsus Medizinischen Universit{\"a}t, Salzburg, {\"O}sterreich",

year = "2024",

month = apr,

day = "16",

doi = "10.1007/s00112-024-01955-3",

language = "Deutsch",

journal = "Monatsschrift Kinderheilkunde",

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publisher = "Springer Nature",

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Azizi, AA, Baumgartner, A-C, Seidel, M, Zobel, J, Ebetsberger-Dachs, G, Zellner, H, Rauscher, C, Birnbacher, R, Pichler, U, Haberlandt, E, Hedrich, C, Berghoff, AS, Gruber, RW, Welponer, T, Hutterer, M, Krottendorfer, K, Pletschko, T, Röhl, C, AG für Pädiatrische Hämato-Onkologie (AGPHO) & AG für Neuropädiatrie der Österreichischen Gesellschaft für Kinder- und Jugendheilkunde (ÖGKJ) 2024, 'Neurofibromatose Typ 1: Vorsorgebogen für Kinder und Jugendliche in Österreich: Konsensuspapier des österreichischen NF-Netzwerks', Monatsschrift Kinderheilkunde. https://doi.org/10.1007/s00112-024-01955-3

TY - JOUR

T1 - Neurofibromatose Typ 1: Vorsorgebogen für Kinder und Jugendliche in Österreich

T2 - Konsensuspapier des österreichischen NF-Netzwerks

AU - Azizi, Amedeo A.

AU - Baumgartner, Alicia-Christina

AU - Seidel, Markus

AU - Zobel, Joachim

AU - Ebetsberger-Dachs, Georg

AU - Zellner, Herta

AU - Rauscher, Christian

AU - Birnbacher, Robert

AU - Pichler, Ursula

AU - Haberlandt, Edda

AU - Hedrich, Cora

AU - Berghoff, Anna Sophie

AU - Gruber, Robert W

AU - Welponer, Tobias

AU - Hutterer, Markus

AU - Krottendorfer, Kerstin

AU - Pletschko, Thomas

AU - Röhl, Claas

AU - AG für Pädiatrische Hämato-Onkologie (AGPHO)

AU - AG für Neuropädiatrie der Österreichischen Gesellschaft für Kinder- und Jugendheilkunde (ÖGKJ)

N1 - Rauscher: Universitätsklinik für Kinder- und Jugendheilkunde, Uniklinikum der Paracelsus Medizinischen Universität, Salzburg, Österreich; Welponer: Universitätsklinik für Dermatologie und Allergologie, Uniklinikum der Paracelsus Medizinischen Universität, Salzburg, Österreich

PY - 2024/4/16

Y1 - 2024/4/16

N2 - BackgroundNeurofibromatosis type 1 (NF1) manifests in childhood with a variety of potential symptoms. Besides the development of tumours (primarily but not exclusively in the nervous system), orthopaedic, neurocognitive/educational and psychosocial aspects are particularly important.ObjectiveIn Austria clear guidelines for the care of children and adolescents with NF1 were lacking. The development of a form for prevention and care should facilitate a standardised approach.MethodologyThe Austrian NF network was established in 2021 and is comprised of experts as well as members of the patient association NF Kinder, reached a consensus through repeated discussions regarding the optimal preventive care for children and adolescents with NF1. The form is designed for healthcare professionals who provide care and treatment for individuals with NF1.ResultsThe paediatric prevention and care form is divided into the sections clinical examination/laboratory/radiology and referral. It precisely indicates when and which investigations or controls are considered advisable or recommended.ConclusionThe development of this form for paediatric prevention and care in NF1 represents a significant step in standardising the care for children and adolescents with NF1 in Austria. With its clear structure and practical recommendations, it aims to facilitate more effective management and early detection of relevant health aspects.

AB - BackgroundNeurofibromatosis type 1 (NF1) manifests in childhood with a variety of potential symptoms. Besides the development of tumours (primarily but not exclusively in the nervous system), orthopaedic, neurocognitive/educational and psychosocial aspects are particularly important.ObjectiveIn Austria clear guidelines for the care of children and adolescents with NF1 were lacking. The development of a form for prevention and care should facilitate a standardised approach.MethodologyThe Austrian NF network was established in 2021 and is comprised of experts as well as members of the patient association NF Kinder, reached a consensus through repeated discussions regarding the optimal preventive care for children and adolescents with NF1. The form is designed for healthcare professionals who provide care and treatment for individuals with NF1.ResultsThe paediatric prevention and care form is divided into the sections clinical examination/laboratory/radiology and referral. It precisely indicates when and which investigations or controls are considered advisable or recommended.ConclusionThe development of this form for paediatric prevention and care in NF1 represents a significant step in standardising the care for children and adolescents with NF1 in Austria. With its clear structure and practical recommendations, it aims to facilitate more effective management and early detection of relevant health aspects.

KW - Interdisciplinary care

KW - NF1

KW - National recommendations

KW - Prevention

KW - Screening

KW - Standardised care

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U2 - 10.1007/s00112-024-01955-3

DO - 10.1007/s00112-024-01955-3

M3 - Übersichtsarbeit

SN - 0026-9298

JO - Monatsschrift Kinderheilkunde

JF - Monatsschrift Kinderheilkunde

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