RecruitingNCT05554835

Global Registry and Natural History Study for Mitochondrial Disorders

Global Mitochondrial Registry to Define Natural History and Outcome Measures to Achieve Definite Trial Readiness for Mitochondrial Disorders

Sponsor

LMU Klinikum

Enrollment

6,000 participants

Start Date

Feb 1, 2009

Study Type

OBSERVATIONAL

Conditions

MDS NARP Syndrome Leigh Syndrome Mitochondrial Diseases MELAS Syndrome MItochondrial Myopathies Kearns-Sayre Syndrome MIDD SANDO SCAE MERRF Syndrome Coenzyme Q10 Deficiency LHON MNGIE MIRAS Barth Syndrome Pearson Syndrome CPEO

Summary

The main goal of the project is provision of a global registry for mitochondrial disorders to harmonize previous national registries, enable world-wide participation and facilitate natural history studies, definition of outcome measures and conduction of clinical trials.

Eligibility

Plain Language Summary

Simplified for easier understanding

This study is creating a global registry and natural history study for people with mitochondrial diseases — a group of genetic conditions where the mitochondria (the energy-producing parts of cells) don't work properly. These diseases can affect almost any organ in the body and are often poorly understood. By collecting data from patients worldwide over time, researchers aim to better understand how these conditions progress and identify patterns that might lead to new treatments. You may be eligible if: - You have a suspected or confirmed mitochondrial disease - You are willing to participate You may NOT be eligible if: - You are unwilling to participate Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(18)

Medical University Innsbruck, Department of Pediatrics

Innsbruck, Austria

Salzburger Landeskliniken, SALK, Paracelsus Medizinische Privatuniversität

Salzburg, Austria

Department of neurology, Klinikum rechts der Isar, Technical University Munich

Munich, Bavaria, Germany

Charité Virchow Klinikum, Klinik für Pädiatrie m. S. Neurologie

Berlin, Germany

Universität Bonn, Klinik und Poliklinik für Neurologie

Bonn, Germany

Universitätsklinikum Köln, Klinik und Poliklinik für Kinder- und Jugendmedizin

Cologne, Germany

Universitätsklinikum Düsseldorf, Klinik für allgemeine Pädiatrie, Neonatologie und Kinderkardiologie

Düsseldorf, Germany

Universitätsklinikum Frankfurt, Klinik für Kinder- und Jugendmedizin, Schwerpunkt Neurologie, Neurometabolik und Prävention

Frankfurt am Main, Germany

University Medical Center Freiburg, Center for children and youth medicine

Freiburg im Breisgau, Germany

Martin-Luther-Universität Halle-Wittenberg, Neurologische Klinik und Poliklinik

Halle, Germany

Universitätsklinikum Hamburg Eppendorf Institut für Humangenetik

Hamburg, Germany

Universitätsklinikum Hamburg Eppendorf, Klinik für Kinder-und Jugendmedizin

Hamburg, Germany

Universitätsklinikum Hamburg Eppendorf, Klinik für Neurologie

Hamburg, Germany

Universitätsklinikum Heidelberg, Zentrum für Kinder- und Jugendmedizin, Sektion für Neuropädiatrie und Stoffwechselmedizin

Heidelberg, Germany

LMU Klinikum, Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik

München, Germany

Klinikum am Steinenberg, Kreiskliniken Reutlingen, Klinik für Kinder-und Jugendmedizin, Perinatal- u. Stoffwechselzentrum

Reutlingen, Germany

Universitätsklinikum Tübingen, Neurologische Klinik und Hertie Institut für Klinische Hirnforschung

Tübingen, Germany

Department of Clinical and Experimental Medicine, Neurological Institute, University of Pisa & AOUP

Pisa, Italy

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NCT05554835

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