| Schöls, Ludger |
| Recruiting | N/A | 100 | Europe | | University Hospital Tuebingen | Movement Disorder, Cognitive Decline | 06/22 | 09/23 | | |
PROFA, NCT05943002: Patient-reported, Health Economic and Psychosocial Outcomes in Friedreich Ataxia |
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| Recruiting | N/A | 200 | Europe | | German Center for Neurodegenerative Diseases (DZNE), McMaster University, Sorbonne University | Friedreich Ataxia | 08/24 | 10/24 | | |
EFACTS, NCT02069509: Patient Registry of the European Friedreich's Ataxia Consortium for Translational Studies |
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| Recruiting | N/A | 1200 | Europe, RoW | | European Friedreich's Ataxia Consortium for Translational Studies | Friedreich's Ataxia | 12/24 | 12/24 | | |
NCT06623890: A Study to Learn More About the Long-Term Safety of BIIB141 (Omaveloxolone) in Participants With Friedreich's Ataxia Who Are Prescribed it for the First Time |
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| Recruiting | N/A | 300 | Europe, US, RoW | Omaveloxolone, SKYCLARYS, BIIB141 | Reata, a wholly owned subsidiary of Biogen | Friedreich Ataxia | 10/29 | 10/29 | | |
| Not yet recruiting | N/A | 5000 | NA | Data set as defined by the ERN Research Workgroup of the European Commission | University Hospital Tuebingen | Rare Diseases | 11/25 | 12/25 | | |
NCT03206190: The preSPG4 Study - Studying the Prodromal and Early Phase of SPG4 |
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| Recruiting | N/A | 200 | Europe | SPRS Score and clinical signs, Cognition Testing using CANTAB, Lumbar Puncture and blood draw, MRI, Electrophysiology, Testing functional performance, Non motor symptoms | University Hospital Tuebingen | Hereditary Spastic Paraplegia, Hereditary, Spastic Paraplegia, Autosomal Dominant | 12/29 | 12/31 | | |
HSP-PBP, NCT03981276: Phenotypes, Biomarkers and Pathophysiology in Hereditary Spastic Paraplegias and Related Disorders |
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| Recruiting | N/A | 2000 | Europe | Clinical rating scale to measure disease severity and progression, Spastic Paraplegia Rating Scale (SPRS), Next-Gen Sequencing (NGS) | Dr. Rebecca Schule, German Federal Ministry of Education and Research, German Center for Neurodegenerative Diseases (DZNE) | Hereditary Spastic Paraplegia | 08/39 | 08/41 | | |
| Recruiting | N/A | 3000 | Europe, Canada, US, RoW | | Friedreich's Ataxia Research Alliance | Friedreich Ataxia | 01/48 | 01/48 | | |
NCT05554835: Global Registry and Natural History Study for Mitochondrial Disorders |
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| Recruiting | N/A | 6000 | Europe | | LMU Klinikum, European Commission, German Federal Ministry of Education and Research, University of Pisa | Mitochondrial Diseases, Kearns-Sayre Syndrome, MIDD, SANDO, SCAE, NARP Syndrome, MELAS Syndrome, MERRF Syndrome, Coenzyme Q10 Deficiency, LHON, MNGIE, MIRAS, Barth Syndrome, MDS, Mitochondrial Myopathies, Leigh Syndrome, Pearson Syndrome, CPEO | 12/40 | 12/40 | | |
| Schüle, Rebecca |
| Recruiting | N/A | 250 | Europe, Canada, RoW | Clinical rating scale to measure Ataxia disease severity and progression, Scale for the Assessment and rating of Ataxia (SARA), Clinical rating scale to measure spastic paraplegia disease severity and progression, Spastic Paraplegia Rating Scale (SPRS), Disease-specific severity index for adults with autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS), DSI-ARSACS, Next-Gen Sequencing (NGS) | Dr. Rebecca Schule, German Center for Neurodegenerative Diseases (DZNE), German Research Foundation | Spastic Ataxia | 06/24 | 06/25 | | |
HSP-PBP, NCT03981276: Phenotypes, Biomarkers and Pathophysiology in Hereditary Spastic Paraplegias and Related Disorders |
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| Recruiting | N/A | 2000 | Europe | Clinical rating scale to measure disease severity and progression, Spastic Paraplegia Rating Scale (SPRS), Next-Gen Sequencing (NGS) | Dr. Rebecca Schule, German Federal Ministry of Education and Research, German Center for Neurodegenerative Diseases (DZNE) | Hereditary Spastic Paraplegia | 08/39 | 08/41 | | |
| Dillmann, Katrin |
HSP-PBP, NCT03981276: Phenotypes, Biomarkers and Pathophysiology in Hereditary Spastic Paraplegias and Related Disorders |
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| Recruiting | N/A | 2000 | Europe | Clinical rating scale to measure disease severity and progression, Spastic Paraplegia Rating Scale (SPRS), Next-Gen Sequencing (NGS) | Dr. Rebecca Schule, German Federal Ministry of Education and Research, German Center for Neurodegenerative Diseases (DZNE) | Hereditary Spastic Paraplegia | 08/39 | 08/41 | | |
| Krägeloh-Mann, Ingeborg |
HSP-PBP, NCT03981276: Phenotypes, Biomarkers and Pathophysiology in Hereditary Spastic Paraplegias and Related Disorders |
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| Recruiting | N/A | 2000 | Europe | Clinical rating scale to measure disease severity and progression, Spastic Paraplegia Rating Scale (SPRS), Next-Gen Sequencing (NGS) | Dr. Rebecca Schule, German Federal Ministry of Education and Research, German Center for Neurodegenerative Diseases (DZNE) | Hereditary Spastic Paraplegia | 08/39 | 08/41 | | |
| Döbler-Neumann, Marion |
HSP-PBP, NCT03981276: Phenotypes, Biomarkers and Pathophysiology in Hereditary Spastic Paraplegias and Related Disorders |
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| Recruiting | N/A | 2000 | Europe | Clinical rating scale to measure disease severity and progression, Spastic Paraplegia Rating Scale (SPRS), Next-Gen Sequencing (NGS) | Dr. Rebecca Schule, German Federal Ministry of Education and Research, German Center for Neurodegenerative Diseases (DZNE) | Hereditary Spastic Paraplegia | 08/39 | 08/41 | | |
