Major registry study maps rare disease to speed up trials

NCT ID NCT02069509

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.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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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.

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