Recruiting

Observational StudyThe International Registry for Leigh Syndrome

Sponsor:

The University of Texas Health Science Center, Houston

Code:

NCT03137355

Conditions

Leigh Syndrome

Leigh Disease

Leigh's Necrotizing Encephalopathy

Subacute Necrotizing Encephalomyopathy

Subacute Necrotizing Encephalomyelopathy

Eligibility Criteria

Sex: All

Age: 0 - 70+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

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.

Conditions

Leigh Syndrome

Leigh Disease

Leigh's Necrotizing Encephalopathy

Subacute Necrotizing Encephalomyopathy

Subacute Necrotizing Encephalomyelopathy

Study ID

NCT03137355

Start date

Jun 17, 2015

Status verified date

Nov, 2023

Completion date

Jun 17, 2030

Anticipated

Primary completion date

Jun 17, 2030

Anticipated

Eligibility Criteria

Sex: All

Age: 0 - 70+

Healthy Volunteers: Not accepted

Inclusion Criteria:

All participants with a diagnosis of Leigh syndrome will be invited to participate

Exclusion Criteria:

People without Leigh syndrome

Study Design

Enrollment

200 participants

Anticipated

Interventions and Outcome Measures

Arms

Leigh syndrome

All people diagnosed with Leigh syndrome.

Primary outcome measure

Phenotypical characteristics of Leigh syndrome [ Time Frame: 10 years ]

Central Contacts and Locations

Central contacts

Mary Kay Koenig, MD

713-500-7164 leigh@uth.tmc.edu

William Guerra

713-500-7164 leigh@uth.tmc.edu

Locations

The University of Texas Health Science Center at Houston

Recruiting

Houston, Texas, United States, 77030

Contacts

William Guerra

713-500-7164 leigh@uth.tmc.edu

More Information

Sponsor

The University of Texas Health Science Center, Houston

Last update posted

Dec 1, 2023

Last verified

Nov, 2023

Keywords

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

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by The University of Texas Health Science Center, Houston on 2023-12-01.