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Major registry study maps rare disease to speed up trials

NCT ID NCT02069509

Knowledge-focused Sponsor: European Friedreich's Ataxia Consortium for Translational Studies Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study followed 1200 people with Friedreich's ataxia over time to learn how the disease progresses. Researchers collected health exams and lab results to create a natural history of the condition. The goal was to develop better tools for future clinical trials and improve patient care. No new treatments were tested.

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

1,200 people

The number who actually took part.

Started

May 2010

Finished

Dec 2024

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

Individuals with a genetically confirmed diagnosis of FRDA and control research participants.

Ages

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

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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: * Genetic diagnosis of FRDA

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Conditions

The condition(s) this trial relates to.

Friedreich ataxia

As listed by the trial registrant

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

Friedreich's ataxia

Contacts and locations

Locations

  • Bambino Gesù Children's Hospital, Department of Neurosciences

    Roma, 00146, Italy

  • Fondazione IRCCS Istituto Neurologico Carlo Besta

    Milan, 20133, Italy

  • Hospital Sant Joan de Déu, Servicio de Neurología

    Barcelona, 08950, Spain

  • Hospital Universitario La Paz, Servicio de Neurologia

    Madrid, 28046, Spain

  • Hôpital Pitié Salpêtrière, Bâtiment ICM

    Paris, 75013, France

  • Hôpital de Hautepierre, Service de Neurologie

    Strasbourg, 67098, France

  • Medical University Innsbruck, Department of Neurology

    Innsbruck, 6020, Austria

  • Motol University Hospital, Centre for Hereditary Ataxias

    Prague, 150 06, Czechia

  • National and Kapodistrian University of Athens, Neurogenetics Unit

    Athens, 11528, Greece

  • Tallaght University Hospital, Department of Neurology

    Dublin, D24 TP66, Ireland

  • University College of London, Ataxia Centre, National Hospital for Neurology and Neurosurgery

    London, WC1N 3 BG, United Kingdom

  • University Hospital Aachen, Dept. of Neurology

    Aachen, 52074, Germany

  • University Hospital Bonn, Dept. of Neurology

    Bonn, 53105, Germany

  • University of Munich, Dept. of Neurology, Friedrich-Baur-Institut

    Munich, 80336, Germany

  • University of Tübingen, Dept. of Neurodegenerative Diseases, Hertie-Institute for Clinical Brain Research

    Tübingen, 72076, Germany

  • Université Libre de Bruxelles, Hôpital Erasme, Dpt of Neurology

    Brussels, 1070, Belgium

More trials for these conditions

Other studies related to the condition(s) this trial covers.