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

Recruiting now

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

In brief

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

Key facts

Study ID

NCT03624374

Run by

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

People needed

100

Starts

2018-04-01

Expected to finish

2029-05-01

Last updated by the study team

2024-07-03

Who can join

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

You may qualify if…

• Confirmed DARS2 mutation through genetic analysis
• Ability of the caregiver or participant to speak and understand English at an 8th-grade level

You may not qualify if…

• 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.

Where it is running

• Hugo Moser Center for Leukodystrophies — Baltimore, Maryland, United States (enrolling)

Full record on ClinicalTrials.gov

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