Burden of albinism: development and validation of a burden assessment tool.
Fanny Morice-PicardCharles TaïebAurelie MartiAntoine GliksohnMohammed BennaniChristine BodemerKhaled Ezzedinenull nullPublished in: Orphanet journal of rare diseases (2018)
This questionnaire represents the first specific assessment tool for evaluating the burden of albinism. It is easy to use and relatively quick to complete, which will allow the burden to be evaluated over time with a reproducible questionnaire. To ensure that this questionnaire can be used by as many people as possible, cultural and linguistic validation in US English was conducted with the original French version.