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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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Bambino Gesù Children's Hospital, Department of Neurosciences
Roma, 00146, Italy
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Fondazione IRCCS Istituto Neurologico Carlo Besta
Milan, 20133, Italy
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Hospital Sant Joan de Déu, Servicio de Neurología
Barcelona, 08950, Spain
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Hospital Universitario La Paz, Servicio de Neurologia
Madrid, 28046, Spain
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Hôpital Pitié Salpêtrière, Bâtiment ICM
Paris, 75013, France
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Hôpital de Hautepierre, Service de Neurologie
Strasbourg, 67098, France
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Medical University Innsbruck, Department of Neurology
Innsbruck, 6020, Austria
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Motol University Hospital, Centre for Hereditary Ataxias
Prague, 150 06, Czechia
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National and Kapodistrian University of Athens, Neurogenetics Unit
Athens, 11528, Greece
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Tallaght University Hospital, Department of Neurology
Dublin, D24 TP66, Ireland
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University College of London, Ataxia Centre, National Hospital for Neurology and Neurosurgery
London, WC1N 3 BG, United Kingdom
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University Hospital Aachen, Dept. of Neurology
Aachen, 52074, Germany
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University Hospital Bonn, Dept. of Neurology
Bonn, 53105, Germany
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University of Munich, Dept. of Neurology, Friedrich-Baur-Institut
Munich, 80336, Germany
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University of Tübingen, Dept. of Neurodegenerative Diseases, Hertie-Institute for Clinical Brain Research
Tübingen, 72076, Germany
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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.
- Can advanced heart scans predict the biggest killer in Friedreich's ataxia?
- Experimental drug aims to halt rare neurological decline
- New brain scans could reveal hidden clues in rare nerve disease
- Genetic clues may predict when Friedreich's ataxia begins
- Can a supplement and exercise improve stamina in Friedreich's ataxia?
- Exercise and drug combo may fight fatigue in rare disease