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International Registry for Leigh Syndrome

This study is creating a database of information for people with Leigh syndrome (a rare, progressive brain disorder). The goal is to better understand Leigh syndrome, including how it progresses and what factors might predict outcomes. Researchers hope this information will lead to improved treatments in the future. Anyone diagnosed with Leigh syndrome, from newborns to 100 years old, can participate. The study aims to gather information on 200 participants, and researchers will look at the different characteristics of Leigh syndrome over a 10-year period.

Study design
This is an observational study, meaning researchers will collect information without giving any specific treatments. It aims to include 200 participants of all ages and genders.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The study will look at the characteristics of Leigh syndrome over 10 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03137355

The International Registry for Leigh Syndrome

Recruiting
Not specifiedAges 0+Observational
The University of Texas Health Science Center, Houston
~200 participants
Updated 2023-12-01 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Phenotypical characteristics of Leigh syndrome
Measured over 10 years

Conditions

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

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Leigh Disease

NCT03137355

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • The University of Texas Health Science Center at Houston

    Houston, Texasstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

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

Who to contact

Mary Kay Koenig, MD
[email protected]
713-500-7164
Email the study team

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Eligibility criteria

Inclusion

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

Exclusion

People without Leigh syndrome

What this trial measures

  • Phenotypical characteristics of Leigh syndrome10 years

    The goal of this project is to collect longitudinal data on the natural history of Leigh syndrome.