Researchers launch major study to track rare brain disease over time
NCT ID NCT03639285
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study follows up to 600 people with leukodystrophy, a rare genetic disorder affecting the brain's white matter. Researchers aim to track how the disease progresses, improve diagnosis through genetic testing and brain scans, and evaluate outcomes like hospitalizations and response to treatments such as bone marrow transplant. No new drug or therapy is being tested; instead, the goal is to gather knowledge to better care for patients.
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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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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Primary Children's Hospital
RECRUITINGSalt Lake City, Utah, 84113, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••