Burden of albinism: development and validation of a burden assessment tool

Burden of albinism: development and validation of a burden assessment tool

Abstract Background Albinism comprises a group of autosomal recessive diseases that are characterized by poor vision and a variable hypopigmentation phenotype. A comprehensive literature review showed that no tool can assess the burden experienced by individuals who present with albinism, although s...

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Bibliographic Details
Main Authors: Fanny Morice-Picard, Charles Taïeb, Aurelie Marti, Antoine Gliksohn, Mohammed Bennani, Christine Bodemer, Khaled Ezzedine, Filière Maladies Rares en Dermatologie: FIMARAD
Format: Article
Language:English
Published: BMC 2018-09-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Burden
Albinism
Real life
Quality of life
Online Access:http://link.springer.com/article/10.1186/s13023-018-0894-3

Internet

http://link.springer.com/article/10.1186/s13023-018-0894-3

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