ALD registry study for patients and families in the U.S.
Part of Brain & nervous system, Genetic & congenital, Hormones & metabolism clinical trials.
This study builds a national registry to better understand adrenoleukodystrophy (ALD) in patients and families. You may help researchers learn how ALD affects people over time and improve future care.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You (or a family member) have a diagnosis of ALD or a likely ABCD1 gene change connected to ALD
- You are living in the United States or a U.S. territory
- You can participate in-person consent (or have someone legally allowed to consent for you if needed)
- You have not had a bone marrow transplant (BMT) or other cell therapy
- You can communicate in English for the in-person visit at the clinic
- You are able and willing to complete the study steps the study team asks for
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
Similar studies
Other trials that look related to this one.
This study looks at immune cells in blood to better understand rare brain conditions caused by genetic changes. It may help researchers understand why symptoms happen and how the immune system is involved.
This study collects brain-related medical information and biological samples to help researchers better understand leukodystrophies and other white-matter brain disorders. It may help future diagnosis and treatments by building a valuable “biobank” of patient data and samples.
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.
This study follows people with cerebral adrenoleukodystrophy (CALD) who have been treated with eli-cel, a gene therapy. It tracks their long-term health to see how well the treatment works in everyday care.
This study checks whether a brain MRI scan can confirm a blood/planning marker that predicts how X-linked adrenoleukodystrophy (ALD) may progress. If you have ALD, it may help researchers better track the condition using safer, non-invasive imaging.
This study follows women with a genetic condition called X-linked adrenoleukodystrophy (ALD) over time to see how the disease progresses. It includes annual check-ups and MRI scans of the brain and spinal cord to monitor changes.
Hear when a new Adrenoleukodystrophy trial opens
We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.