RECRUITING

Krabbe Disease Global Patient Registry

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

The purpose of this study is to develop a clinical database of individuals diagnosed with Krabbe disease in order to determine which symptoms herald the onset of clinical disease in the various phenotypes of Krabbe disease; to determine whether level of GALC enzyme activity, or a specific genetic mutation predict the clinical course; and to determine which neurodiagnostic tests predict onset and/or severity of the disease.

Official Title

The Institute for Myelin and Glia Exploration's Clinical Database of Patients With Krabbe Disease, A World-Wide Registry

Quick Facts

Study Start:2014-09
Study Completion:2025-09
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT02993796

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. * Anyone diagnosed with Krabbe disease
  2. * Anyone at-risk for Krabbe disease
  3. * Family members of someone diagnosed with, or at-risk for, Krabbe disease.
  1. * Anyone who is not diagnosed with, or at-risk for, Krabbe disease
  2. * Anyone who is not a family member of someone diagnosed with, or at-risk for, Krabbe disease

Contacts and Locations

Study Contact

Thomas J. Langan, MD
CONTACT
716-888-4732
tjlangan@buffalo.edu
Amy Barczykowski
CONTACT
716-829-6101
alp38@buffalo.edu

Principal Investigator

Thomas J. Langan, MD
PRINCIPAL_INVESTIGATOR
Clinical Director, Clinical Research, Institute for Myelin and Glial Exploration

Study Locations (Sites)

State University of New York at Buffalo
Buffalo, New York, 14203
United States

Collaborators and Investigators

Sponsor: State University of New York at Buffalo

  • Thomas J. Langan, MD, PRINCIPAL_INVESTIGATOR, Clinical Director, Clinical Research, Institute for Myelin and Glial Exploration

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 Date2014-09
Study Completion Date2025-09

Study Record Updates

Study Start Date2014-09
Study Completion Date2025-09

Terms related to this study

Keywords Provided by Researchers

  • Krabbe disease
  • globoid cell leukodystrophy
  • galactosylceramide lipidosis
  • sphingolipidosis

Additional Relevant MeSH Terms

  • Krabbe Disease