Natural History, Diagnosis, and Outcomes for Leukodystrophies

Description

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

Conditions

Leukodystrophy

Study Overview

Study Details

Study overview

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

Natural History, Diagnosis, and Outcomes for Leukodystrophies

Natural History, Diagnosis, and Outcomes for Leukodystrophies

Condition
Leukodystrophy
Intervention / Treatment

-

Contacts and Locations

Salt Lake City

Primary Children's Hospital, Salt Lake City, Utah, United States, 84113

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * 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.
  • * 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.

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

University of Utah,

Study Record Dates

2050-12-31