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Worldwide data pool could pave the way for mitochondrial disease trials

NCT ID NCT05554835

Knowledge-focused Sponsor: LMU Klinikum Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 13, 2026 · Last updated Aug 07, 2026 · Updated 2 times

Summary

This study creates a global registry for people with mitochondrial disorders—rare diseases that affect energy production in cells. By collecting health data from 6,000 participants worldwide, researchers aim to understand how these diseases progress and identify the best ways to measure outcomes. The goal is to prepare for future clinical trials that could test new treatments.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry will provide the data needed to design and run future clinical trials for mitochondrial diseases, potentially speeding up the development of treatments.
What could go wrong
This is an observational registry, not a treatment trial. It collects information but does not test any therapy, so it cannot directly improve health. Success depends on widespread participation and data quality.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 6,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Feb 2009

Expected to finish

Dec 2040

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

All

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * suspected or confirmed mitochondrial disease * willingness to participate Exclusion Criteria: * unwillingness to participate

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Conditions

The condition(s) this trial relates to.

ataxia neuropathy spectrum autosomal dominant progressive external ophthalmoplegia Barth syndrome coenzyme Q10 deficiency inborn mitochondrial metabolism disorder inborn mitochondrial myopathy Kearns-Sayre syndrome Leber hereditary optic neuropathy Leigh syndrome maternally-inherited diabetes and deafness MELAS syndrome MERRF syndrome mitochondrial disease mitochondrial neurogastrointestinal encephalomyopathy myelodysplastic syndrome NARP syndrome Pearson syndrome progressive external ophthalmoplegia recessive mitochondrial ataxia syndrome sensory ataxic neuropathy, dysarthria, and ophthalmoparesis spinocerebellar ataxia with epilepsy VLCAD deficiency

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Barth syndrome Coenzyme Q10 deficiency CPEO Kearns-Sayre syndrome Leigh syndrome LHON MDS Melas syndrome Merrf syndrome MIDD MIRAS Mitochondrial diseases Mitochondrial myopathies MNGIE Narp syndrome Pearson syndrome SANDO SCAE

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    34 sites in 3 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • AOU City of Health and Science of Turin - Molinette Hospital

    RECRUITING

    Turin, Italy

  • AOU Meyer IRCCS Children's Hospital

    RECRUITING

    Florence, Italy

  • AOUI Verona

    RECRUITING

    Verona, Italy

  • Bambino Gesù Children's Hospital

    RECRUITING

    Rome, Italy

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

    RECRUITING

    Berlin, 13353, Germany

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

    RECRUITING

    Pisa, Italy

  • Department of Neurology, Klinikum Rechts der Isar, Technical University Munich

    RECRUITING

    Munich, Bavaria, 81675, Germany

  • Giannina Gaslini Children's Hospital

    RECRUITING

    Genova, Italy

  • IRCCS Foundation Ca' Granda - Ospedale Maggiore

    RECRUITING

    Milan, Italy

  • IRCCS Foundation Carlo Besta Neurological Institute

    RECRUITING

    Milan, Italy

  • IRCCS Foundation Stella Maris

    RECRUITING

    Pisa, Italy

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

    RECRUITING

    Reutlingen, 72764, Germany

  • LMU Klinikum

    RECRUITING

    München, 80337, Germany

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

    RECRUITING

    München, 80336, Germany

  • Medical University Innsbruck, Department of Pediatrics

    RECRUITING

    Innsbruck, 6020, Austria

  • Nemo Clinical Center

    RECRUITING

    Brescia, Italy

  • Salzburger Landeskliniken, SALK, Paracelsus Medizinische Privatuniversität

    RECRUITING

    Salzburg, 5020, Austria

  • Sant'Orsola-Malpighi University Hospital

    RECRUITING

    Bologna, Italy

  • University Hospital G. Martino

    RECRUITING

    Messina, Italy

  • University Medical Center Freiburg, Center for children and youth medicine

    RECRUITING

    Freiburg im Breisgau, 79106, Germany

  • University of Bologna

    RECRUITING

    Bologna, Italy

  • University of Bologna

    RECRUITING

    Bologna, Italy

  • University of Cagliari

    RECRUITING

    Cagliari, Italy

  • University of Rome

    RECRUITING

    Rome, Italy

  • Universität Bonn, Klinik und Poliklinik für Neurologie

    RECRUITING

    Bonn, Germany

  • Universitätsklinik und Poliklinik für Neurologie Universitätsmedizin Halle

    RECRUITING

    Halle, 06097, Germany

  • Universitätsklinikum Düsseldorf, Klinik für allgemeine Pädiatrie, Neonatologie und Kinderkardiologie

    RECRUITING

    Düsseldorf, 40225, Germany

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

    RECRUITING

    Frankfurt am Main, 60590, Germany

  • Universitätsklinikum Hamburg Eppendorf Institut für Humangenetik

    RECRUITING

    Hamburg, 20246, Germany

  • Universitätsklinikum Hamburg Eppendorf, Klinik für Kinder-und Jugendmedizin

    RECRUITING

    Hamburg, 20246, Germany

  • Universitätsklinikum Hamburg Eppendorf, Klinik für Neurologie

    RECRUITING

    Hamburg, 20246, Germany

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

    RECRUITING

    Heidelberg, 69120, Germany

  • Universitätsklinikum Köln, Klinik und Poliklinik für Kinder- und Jugendmedizin

    RECRUITING

    Cologne, 50931, Germany

  • Universitätsklinikum Tübingen, Neurologische Klinik und Hertie Institut für Klinische Hirnforschung

    RECRUITING

    Tübingen, 72076, Germany

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