Quality of life in women with X-ALD : Open enrollment from 01/10/2020 to 31/12/2022
Quality of life in women with X-ALD: Although adrenoleukodystrophy (X-ALD) primarily affects men due to the X-linked inheritance, studies show that most women with X-ALD develop neurological symptoms during their lifetime, too. To date, however, there are hardly any studies that comprehensively record the influence of various neurological symptoms in women with X-ALD on the quality of life in various areas (including activities of daily life, profession, social network, sleep quality, sexuality). Since the occurrence of neurological symptoms in women with X-ALD is often underestimated in practice due to milder, later-onset courses of the disease, it is all the more important to draw attention to the frequent occurrence of symptomatic courses in women and to highlight the resulting restrictions on quality of life. The aim of the study is to systematically record the quality of life in women with X-ALD with and without symptoms. By participating in the study, you will help us to investigate X-ALD in women more closely and provide important impulses for diagnosis and treatment. Since your quality of life is recorded by means of a questionnaire, study participation can be done from home and is associated with little effort.