Natural History Study of Leukoencephalopathy With Brainstem and Spinal Cord Involvement and Lactate Elevation (LBSL)

Description

In this study, we will conduct retrospective chart and imaging reviews and prospective longitudinal virtual assessments of individuals with LBSL.

Conditions

Leukoencephalopathies, LBSL, Leukoencephalopathy With Brainstem and Spinal Cord Involvement and Lactate Elevation, White Matter Disease, Ataxia, Cerebellar, Genetic Disease

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Study Overview

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Study Details

Study overview

In this study, we will conduct retrospective chart and imaging reviews and prospective longitudinal virtual assessments of individuals with LBSL.

Characterization of the Natural History of Leukoencephalopathy With Brainstem and Spinal Cord Involvement and Lactate Elevation

Natural History Study of Leukoencephalopathy With Brainstem and Spinal Cord Involvement and Lactate Elevation (LBSL)

Condition
Leukoencephalopathies
Intervention / Treatment

-

Contacts and Locations

Baltimore

Hugo Moser Center for Leukodystrophies, Baltimore, Maryland, United States, 21205

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

  • 1. Confirmed DARS2 mutation through genetic analysis
  • 2. Ability of the caregiver or participant to speak and understand English at an 8th-grade level
  • * The vulnerable populations of prisoners, non-viable neonates, pregnant women, adults lacking the capacity to consent, non-English speakers or children who are in foster care or wards of the state.

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Hugo W. Moser Research Institute at Kennedy Krieger, Inc.,

Amena S Fine, MD PhD, PRINCIPAL_INVESTIGATOR, Moser Center for Leukodystrophies at Kennedy Krieger Institute

Study Record Dates

2029-05