Registry for X-linked adrenal and brain fat disease
Part of Brain & nervous system, Genetic & congenital, Hormones & metabolism clinical trials.
This study collects health information and test results from people with X-linked adrenoleukodystrophy (X-ALD) and some genetic carriers. It helps researchers better understand the condition and how it varies, which can guide future care and studies.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You (or the patient) must have X-ALD confirmed by genetic testing and a blood fat test called VLCFA
- If you’re in the carrier group, you must be an at-risk genetic carrier without symptoms
- Age must be between 6 and 70 years old
- You must be able to understand and do the study questionnaires/tests and consent to participate
- You must be able to have MRI/eye tests safely (no MRI-blocking metal or other contraindications)
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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