New ALD registry aims to unlock secrets of rare disease
NCT ID NCT03789721
First seen May 14, 2026 · Last updated May 22, 2026 · Updated 3 times
Summary
This study creates a national registry for people with adrenoleukodystrophy (ALD) and their families. Researchers will collect medical records and survey data every six months to understand how the disease progresses and to find biological markers. Up to 1,000 participants of any age living in the U.S. can join. No treatments or interventions are given.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Masonic Cancer Center at University of Minnesota
RECRUITINGMinneapolis, Minnesota, 55455, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
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