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

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

Abstract Background Neurofibromatosis Type 1 (NF1) is a common genetic neurocutaneous disease, with an autosomal dominant inheritance mode. Quality of life has been shown impaired in NF1, due to severe complications, cosmetic features, and uncertainty about the disorder. Methods This study sought to...

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Bibliographic Details
Main Authors: Marie-Laure Armand, Charles Taieb, Aline Bourgeois, Mireille Bourlier, Mohammed Bennani, Christine Bodemer, Pierre Wolkenstein, along with the French national network on rare skin diseases (FIMARAD)
Format: Article
Language:English
Published: BMC 2019-05-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Neurofibromatosis type 1
NF1
Von Recklinghausen’s disease
Individual disease burden
Quality of life
Questionnaire
Online Access:http://link.springer.com/article/10.1186/s13023-019-1067-8

Internet

http://link.springer.com/article/10.1186/s13023-019-1067-8

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