We have previously shared details of a study being conducted by ELA to research quality of life in women with X-ALD.
The study is to investigate the influence of neurological symptoms of X-ALD on the quality of life of affected women in various areas (including everyday life, work, social network, sleep quality, sexuality, mood). It involves completing a questionnaire with a research platform called Leuconnect. It takes approximately 40 minutes to compelte and data entered will be anonymised for storage and evaluation.
Who can take part?
Asymptomatic or symptomatic women with ALD who are over 18 years
Women with X-ALD but no symptoms are encouraged to participate
To find out more: https://www.leuconnect.com/en-GB/Cms/Post/10027
To take part: https://www.leuconnect.com/en-GB/Study/Card/3