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โ† Trials
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Adrenoleukodystrophy National Registry Study

Recruitingn/aAges any - anyAllMasonic Cancer Center, University of Minnesota
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In plain words

What the trial is, and whether it could suit you

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.

Sign in to get the eligibility rules as simple questions to take to your doctor.

๐Ÿ“‹ Eligibility rules (as published)
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.)
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What it tests

  • Medical Record Abstraction
  • Biospecimen Sample Collection
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Where

1 site
Masonic Cancer Center at University of Minnesota
Minneapolis, United States
๐Ÿค Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible โ€” always decide together with your own doctor.
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