Actively Recruiting
Adrenoleukodystrophy National Registry Study
Led by Masonic Cancer Center, University of Minnesota · Updated on 2026-05-12
1000
Participants Needed
1
Research Sites
561 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
The aim of this registry to understand the natural history and disease progression in ALD and potentially develop bio-markers using the biospecimens collected using this registry.
CONDITIONS
Official Title
Adrenoleukodystrophy National Registry Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Age 0 to 100 years
- Diagnosed with Adrenoleukodystrophy (ALD) confirmed by positive VLCFA testing and/or genetic mutation
- Known or presumed mutation in the ABCD1 gene based on family history or confirmed mutation
- Living in the United States or its territories
You will not qualify if you...
- Lack capacity to consent or assent without a legally authorized representative or guardian
- Have undergone bone marrow transplant (BMT) or other cellular therapy
- Not fluent in English and unable to consent in person at the BMT Journey Clinic
- Illiterate
- Determined unlikely to complete study requirements due to language barriers, compliance, or other issues
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Masonic Cancer Center at University of Minnesota
Minneapolis, Minnesota, United States, 55455
Actively Recruiting
Research Team
A
Ashish Gupta, MD
CONTACT
P
Paul Orchard, MD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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