Actively Recruiting

All Genders
NCT03639285

Natural History, Diagnosis, and Outcomes for Leukodystrophies

Led by University of Utah · Updated on 2026-01-13

600

Participants Needed

1

Research Sites

2293 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

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

CONDITIONS

Official Title

Natural History, Diagnosis, and Outcomes for Leukodystrophies

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Evidence by clinical exam, radiological findings, and/or testing, of an inherited leukodystrophy.
  • Ability to travel to the leukodystrophy clinic at Primary Children's Hospital, Salt Lake City, Utah.
  • Ability to tolerate a general physical exam and a neurological exam.
Not Eligible

You will not qualify if you...

  • Unable to be evaluated at the University of Utah Hospital or Primary Children's Hospital.
  • Refusal to sign the study consent form.
  • Evidence or finding of another non-genetic cause of their condition.
  • Known white matter disease or lesions related to birth or prenatal injury, multiple sclerosis, trauma, infection, immunization, post-infectious effects (e.g., ADEM), metabolic disturbances (e.g., central pontine myelinolysis), neoplasms, primary rheumatologic diseases (e.g., systemic lupus erythematosis), stroke, hypoxic-ischemic injury, drug or toxin effects, seizures, or endocrine disturbances.

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 1 location

1

Primary Children's Hospital

Salt Lake City, Utah, United States, 84113

Actively Recruiting

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Research Team

J

Josh Bonkowsky, MD, PhD

CONTACT

C

Courtney Chambers

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

0

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