There are no studies in France on the burden of cerebral adrenoleukodystrophy (cALD) on the children affected and their families.
In partnership with ELA International, and accompanied by ARGO Santé, a health research and consulting firm, BlubirdBio is launching a study on the impact of the disease on boys with cALD.
The objective of this study is to better understand the impact of the disease on patients and their families in order to assist in diagnosing the disease early, treating symptoms and implementing actions to improve the quality of life of patients and their families.
It is intended for adult caregivers, resident in France, of children diagnosed with cALD before the age of 18 and for less than 10 years. However, if the individual is a caregiver of several children diagnosed with cALD and one of them has been diagnosed with cALD for more than 10 years, the caregiver may participate in the study for the other children who are ill.
This study addresses different aspects of the life course, the diagnosis experience, the effects of care, and the daily life of the affected child and that of their family, as well as the consequences on the caregiver's professional life and the family's financial resources.
It takes place online on Leuconnect, using questionnaires that the caregiver can answer according to their availability. It will be supplemented by a telephone interview of approximately 30 minutes on the description of the care pathway.
This survey is conducted confidentially in accordance with the legal standards governing Leuconnect.
Your testimony is extremely valuable and your expertise on the disease is invaluable to research.