New ALD registry aims to unlock secrets of rare disease

NCT ID NCT03789721

First seen May 14, 2026 · Last updated May 15, 2026 · Updated 1 time

Summary

This study is building a national registry of people with adrenoleukodystrophy (ALD) and their family members. Researchers will collect medical records and survey data every six months to understand how the disease progresses and to find biological markers. No treatment is given; the goal is simply to learn more about ALD.

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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

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Masonic Cancer Center at University of Minnesota

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.