RECRUITING

The International Registry for Leigh Syndrome

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 database containing clinical and laboratory information for patients with Leigh syndrome. The goal is to provide a greater understanding of Leigh syndrome allowing further characterization of this disease.

Official Title

The International Registry for Leigh Syndrome

Quick Facts

Study Start:2015-06-17
Study Completion:2030-06-17
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03137355

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:0 Days to 100 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * All participants with a diagnosis of Leigh syndrome will be invited to participate
  1. * People without Leigh syndrome

Contacts and Locations

Study Contact

Mary Kay Koenig, MD
CONTACT
713-500-7164
leigh@uth.tmc.edu
William Guerra
CONTACT
713-500-7164
leigh@uth.tmc.edu

Principal Investigator

Mary Kay Koenig, MD
PRINCIPAL_INVESTIGATOR
The University of Texas Health Science Center, Houston

Study Locations (Sites)

The University of Texas Health Science Center at Houston
Houston, Texas, 77030
United States

Collaborators and Investigators

Sponsor: The University of Texas Health Science Center, Houston

  • Mary Kay Koenig, MD, PRINCIPAL_INVESTIGATOR, The University of Texas Health Science Center, Houston

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 Date2015-06-17
Study Completion Date2030-06-17

Study Record Updates

Study Start Date2015-06-17
Study Completion Date2030-06-17

Terms related to this study

Keywords Provided by Researchers

  • Leigh Syndrome
  • Leigh Disease
  • Leigh's Necrotizing Encephalopathy
  • Subacute Necrotizing Encephalomyelopathy
  • Subacute Necrotizing Encephalomyopathy

Additional Relevant MeSH Terms

  • Leigh Syndrome
  • Leigh Disease
  • Leigh's Necrotizing Encephalopathy
  • Subacute Necrotizing Encephalomyopathy
  • Subacute Necrotizing Encephalomyelopathy