Database for patients with Leigh syndrome
Official title: The International Registry for Leigh Syndrome
Run by The University of Texas Health Science Center, Houston · NCT03137355 · Data updated 2026-11-12
This study is creating a database to gather information from people with Leigh syndrome to better understand the condition and improve treatment options.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 0 Days to 100 Years |
| Sex | All |
| Enrollment | 200 (estimated) |
| Sponsor | The University of Texas Health Science Center, Houston Academic / other |
| Locations | 1 site (Houston, Texas) |
| Status | Recruiting |
| Started | June 17, 2015 |
| Main results expected | June 17, 2030 |
| Study ends | June 17, 2030 |
| Registry record updated | December 1, 2023 |
| Trial ID | NCT03137355 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals diagnosed with Leigh syndrome.
✕Probably not a fit
Patients without a diagnosis of Leigh syndrome will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to create a comprehensive database that collects clinical and laboratory information from patients diagnosed with Leigh syndrome. By gathering natural history data, the study seeks to enhance the understanding of this rare neurodegenerative disorder, which is characterized by mitochondrial dysfunction. The information collected will help identify trends and prognostic factors, ultimately improving treatment approaches and patient outcomes. The study focuses on characterizing the disease more effectively through a collaborative effort among affected individuals.
Why it matters
Potential benefit: If successful, this study could lead to improved understanding and management of Leigh syndrome, potentially enhancing patient care and treatment outcomes.
How similar studies have gone: While there have been limited studies on Leigh syndrome, the establishment of a dedicated database for such a rare condition is a novel approach that has not been extensively tested.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * All participants with a diagnosis of Leigh syndrome will be invited to participate Exclusion Criteria: * People without Leigh syndrome
Where it's running
-
The University of Texas Health Science Center at Houston
Houston, Texas, United States Recruiting
Study contacts
- Principal investigator: Mary Kay Koenig, MD — The University of Texas Health Science Center, Houston
- Study coordinator: Mary Kay Koenig, MD
- Email: leigh@uth.tmc.edu
- Phone: 713-500-7164
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
Global registry for mitochondrial disorders
This study is creating a global database for mitochondrial disorders to help understand these diseases better and improve future treatments for patients.
-
Registry for patients with rare diseases
This study is creating a central registry for people with rare diseases to help connect them with researchers and improve treatments.
-
Understanding infection and immunity in mitochondrial diseases
This study looks at how infections and the immune system affect people with mitochondrial diseases to better understand their health challenges and how well vaccines work for them.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.