A new study is available on Leuconnect!

Written on Friday 16 October 2020

Study on the quality of life of women affected by X-linked adrenoleukodystrophy [ALD]

In partnership with ELA International and under the responsibility of Professor Wolfgang Koehler in Germany, the team from the University of Leipzig is opening a study on the quality of life of women affected by the mutation of the ABCD1 gene, responsible for X-linked adrenoleukodystrophy.
This study is aimed at women affected by X-linked adrenoleukodystrophy.
It is now known that women with this mutation can develop late symptoms that progress with age, but these are often underestimated due to the more moderate and delayed progression of the disease.
This study should make it possible to identify the influence of various neurological symptoms on the quality of life of these patients and to highlight the resulting difficulties. It could speed up the diagnosis of the disease and lead to new preventive treatments.
This study is being conducted on the Leuconnect platform
The study will be conducted using online questionnaires on Leuconnect. They will cover a variety of areas, including activities of daily living.
This study will be conducted in 3 languages, and is aimed at English, French and German speakers.
If you have not already done so, come and discover the platform and join the cohort now by registering on Leuconnect at the following link : https://www.leuconnect.com