RECRUITING

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

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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

Official Title

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

Quick Facts

Study Start:2018-04-01
Study Completion:2029-05
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03624374

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.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. Confirmed DARS2 mutation through genetic analysis
  2. 2. Ability of the caregiver or participant to speak and understand English at an 8th-grade level
  1. * 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.

Contacts and Locations

Study Contact

Aditii Makwana, MS
CONTACT
667-205-4498
makwana@kennedykrieger.org
Jordan Goodman, MS
CONTACT
443-923-2769
goodmanj@kennedykrieger.org

Principal Investigator

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

Study Locations (Sites)

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

Collaborators and Investigators

Sponsor: 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

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2018-04-01
Study Completion Date2029-05

Study Record Updates

Study Start Date2018-04-01
Study Completion Date2029-05

Terms related to this study

Keywords Provided by Researchers

  • Natural History Study
  • Kennedy Krieger Institute
  • Virtual assessment
  • DARS2
  • Johns Hopkins Hospital

Additional Relevant MeSH Terms

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