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UvA-DARE is a service provided by the library of the University of Amsterdam (http://dare.uva.nl) UvA-DARE (Digital Academic Repository) Robin Sequence: The road to evidence based personalized treatment Basart, H. Link to publication Citation for published version (APA): Basart, H. (2016). Robin Sequence: The road to evidence based personalized treatment. General rights It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open content license (like Creative Commons). Disclaimer/Complaints regulations If you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: https://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible. Download date: 02 Oct 2020
Transcript of Robin Sequence: The road to evidence based personalized ... · Robin Sequence The road to evidence...
UvA-DARE is a service provided by the library of the University of Amsterdam (http://dare.uva.nl)
UvA-DARE (Digital Academic Repository)
Robin Sequence: The road to evidence based personalized treatment
Basart, H.
Link to publication
Citation for published version (APA):Basart, H. (2016). Robin Sequence: The road to evidence based personalized treatment.
General rightsIt is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s),other than for strictly personal, individual use, unless the work is under an open content license (like Creative Commons).
Disclaimer/Complaints regulationsIf you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, statingyour reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Askthe Library: https://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam,The Netherlands. You will be contacted as soon as possible.
Download date: 02 Oct 2020
Robin SequenceThe road to evidence based
personalized treatment
Robin Sequence
Han
neke Basart
Hanneke Basart
Robin Sequence
The road to evidence based personalized treatment
Hanneke Basart
ISBN/EAN: 978-94-6169-830-8
© 2016 by Hanneke Basart, AmsterdamAll rights reserved
Design: Tijl AkkermansDrawings: Lisette WiebesLayout and printing: Optima Grafische Communicatie, Rotterdam, The NetherlandsElectronic version: http://www.e-pubs.nl/?epub=h.basart
Publication of this thesis was financially supported by: Canfield Scientific Vectra View, Nederlandse Vereniging van Plastische Chirurgie, AMR Medical Research, ABN-Amro
The sponsors, who are gratefully acknowledged, had no involvement in any stage of the study design, data collection, data-analysis, interpretation of the data or the decision to publish study results.
Robin Sequence
The road to evidence based personalized treatment
AcAdemiSch PRoefSchRift
ter verkrijging van de graad van doctoraan de Universiteit van Amsterdamop gezag van de Rector Magnificus
prof. dr. D.C. van den Boomten overstaan van een door het College voor Promoties ingestelde commissie,
in het openbaar te verdedigen in de Agnietenkapelop woensdag 23 maart 2016, te 14:00 uur
door Hanneke Basartgeboren te Amsterdam
Promotiecommissie
Promotores prof. dr. R.c. hennekam Universiteit van Amsterdam prof. dr. c.m.A.m. van der horst Universiteit van Amsterdam
overige leden prof. dr. A.G. Becking Universiteit van Amsterdam prof. dr. J.B. van Goudoever Universiteit van Amsterdam prof. dr. m.A. Grootenhuis Universiteit van Amsterdam dr. A.m. Jung-König Universiteit van Amsterdam prof. dr. V.V.A.m. Knoers Universiteit van Utrecht dr. A.B. mink van der molen WKZ /UMCU/St. Antonius Ziekenhuis
Faculteit der Geneeskunde
Table of contents 5
table of contents
Part 1 What is (not) Robin Sequence?
chapter 1 General introduction and thesis outline.“Will the right Robin Sequence patient rise please?” Definitions and criteria during management of Robin sequence patients in the Nether-lands and Belgium. (Adapted)Journal of Craniomaxillofacial Surgery 2015; 43: 92-96
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chapter 2 Birth prevalence of Robin sequence in the Netherlands from 2000-2010: a retrospective population-based study in a large Dutch cohort and review of the literature.American Journal of Medical Genetics Part A, 2015; 167: 1983-1992
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chapter 3 Etiology and pathogenesis of Robin Sequence in a large Dutch cohort.American Journal of Medical Genetics Part A, 2015; 167: 1972-1982
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chapter 4 Frontometaphyseal dysplasia and keloid formation without FLNA mutations.American Journal of Medical Genetics Part A, 2015; 167: 1215-1222
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Part 2 Objectifying Robin Sequence
chapter 5 Objectifying Facial Morphology in Robin Sequence Using 3D facial scanning. A pilot-study.Submitted
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chapter 6 The reliability of Flexible Fiberoptic Laryngoscopic videos in diagnosing glossoptosis in Robin Sequence patients.Clinical Otolaryngology, 2015 Oct; [Epub ahead of Print]
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Part 3 Treatment outcome
chapter 7 Robin Sequence: Impact on health related quality of life in patients and parents.Submitted
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chapter 8 General Discussion and Future perspectives 111
chapter 9 Summary 127
Samenvatting (Summary, in Dutch) 131
6 Table of contents
Appendices List of Co-authors 139
Curriculum Vitae 141
PhD Portfolio 143
Dankwoord (Acknowledgements, in Dutch) 145
Supplement Questionnaire NVSCA (Chapter 1) 151
Robin Sequence Specific questionnaires (Chapter 7) 157
Supplemental Materials (Chapter 7) 161
