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Burden of adult neurofibromatosis 1: development and validation of a burden assessment tool

Crossref DOI link: https://doi.org/10.1186/s13023-019-1067-8

Published Online: 2019-05-03

Published Print: 2019-12

Update policy: https://doi.org/10.1007/springer_crossmark_policy

Authors

,

Armand, Marie-Laure

Taieb, Charles https://orcid.org/0000-0002-5142-2479
Bourgeois, Aline

Bourlier, Mireille

Bennani, Mohammed

Bodemer, Christine

Wolkenstein, Pierre
Funding

Funding for this research was provided by:

Fimarad (Not applicable)
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Text and Data Mining valid from 2019-05-03
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Article History

Received: 13 September 2018

Accepted: 17 April 2019

First Online: 3 May 2019

Ethics approval and consent to participate

: The questionnaire construction was carried out as part of the RADICO-FARD project, which obtained a favorable opinion from the Committee for the Protection of Individuals (CPP Ouest V, Rennes) on July 31, 2017.The questionnaire was proposed by the patient association, and at no time did the authors of the project or the persons in charge of the analgesia statistics know the identity of the responders.There was no way to make a connection between the answers obtained and the person who answered the questionnaire.The respondents were provided with an information sheet before giving their consent. This information sheet as well as the consent form clearly explained the purpose of the project and guaranteed the anonymity of the responses.

: Not applicable.

: The authors declare that they have no competing interests.

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