Status:
RECRUITING
Adrenoleukodystrophy National Registry Study
Lead Sponsor:
Masonic Cancer Center, University of Minnesota
Conditions:
ALD (Adrenoleukodystrophy)
Adrenoleukodystrophy
Eligibility:
All Genders
Brief Summary
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.
Detailed Description
This is a prospective, non-therapeutic protocol designed to create and maintain a registry of participants with Adrenoleukodystrophy (ALD) and known/presumed mutation for ALD. This study also involves...
Eligibility Criteria
Inclusion Criteria
-
Age 0 - 100
-
ALD patients or family member meeting any of the following criteria:
- Any patient diagnosed with ALD (confirmed by positive VLCFA testing and/or genetic mutation).
- Known or presumed mutation with ALD based on pedigree or confirmed mutation in ABCD1 gene
-
Participants living in the United States and territories
Exclusion Criteria
- Patients diagnosed with ALD who lack the capacity to consent/assent AND do not have a designated legally authorized representative or guardian.
- Patients who have undergone BMT or other cellular therapy .
- Patients not fluent in English who are unable to consent in-person at the BMT Journey Clinic.
- Patients who are illiterate
- Patient determined by the PI or designee to be unlikely to complete required study components (due to language barriers, compliance issues, etc.)
Key Trial Info
Start Date :
May 1 2019
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
February 1 2030
Estimated Enrollment :
1000 Patients enrolled
Trial Details
Trial ID
NCT03789721
Start Date
May 1 2019
End Date
February 1 2030
Last Update
May 8 2025
Active Locations (1)
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1
Masonic Cancer Center at University of Minnesota
Minneapolis, Minnesota, United States, 55455