Natural History, Diagnosis, and Outcomes for Leukodystrophies

Recruiting now

Conditions studied: Leukodystrophy

In brief

The goals of this protocol is to diagnose, care for, and understand the clinical histories and outcomes of people with leukodystrophies.

Key facts

Study ID

NCT03639285

Run by

University of Utah

People needed

600

Starts

2007-01-19

Expected to finish

2050-12-31

Last updated by the study team

2026-01-13

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• evidence by clinical exam, radiological findings, and/or testing, of an inherited leukodystrophy.
• be able to travel to the leukodystrophy clinic (at Primary Children's Hospital, Salt Lake City, Utah);
• be able to tolerate a general physical exam, and a neurological exam.

You may not qualify if…

• unable to be evaluated at the University of Utah Hospital or Primary Children's Hospital;
• refusal to sign study consent form;
• evidence or finding of another non-genetic cause of their condition;
• Persons with known white matter disease or lesions related to: birth injury or prenatal injury, multiple sclerosis, trauma, infection, immunization, or post-infectious effects (e.g. ADEM- acute disseminated encephalomyelitis), metabolic disturbance (e.g. Central pontine myelinolysis), neoplasms, primary rheumatologic diseases (e.g. Systemic lupus erythematosis), stroke, hypoxic-ischemic injury, drug or toxin effect, seizures, or endocrine disturbance.

Where it is running

• Primary Children's Hospital — Salt Lake City, Utah, United States (enrolling)

Full record on ClinicalTrials.gov

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