Registry Study of the Provision of Assistive Devices, Medicines, and Other Healthcare Measures in an Inter-cohort Observation of Patients With ALS , SMA and Other Neurological Diseases.
| Registry | NCT05852418 |
|---|---|
| Status | Completed |
| Study type | Observational |
| Enrollment | 25000 (Estimated) |
| Sponsor | Ambulanzpartner Soziotechnologie APST GmbH (Industry); collaborators: Charite University, Berlin, Germany |
| Conditions | Amyotrophic Lateral Sclerosis |
| Dates | start 2015-10-30, primary completion 2024-12-01, completion 2024-12-01, first posted 2023-05-10, last updated 2026-10-19 |
| Locations | 16 sites in Germany |
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All trials for Amyotrophic Lateral Sclerosis
This registry study aims to collect data on the provision of assistive devices, medicines, and other healthcare measures, such as ventilation therapy and nutrition support, in patients with Amyotrophic lateral sclerosis (ALS), Spinal muscular atrophy (SMA) and other neurological disorders. The data collected should describe the clinical practice, meaning real-world evidence and patient-reported outcomes.
This registry study aims to collect data on the provision of assistive devices, medicines, and other healthcare measures, such as ventilation therapy and nutrition support, in patients with ALS, SMA and other neurological disorders. The data collected should describe the clinical practice, meaning real-world evidence and patient-reported outcomes. The collected data include clinical characteristics, medical history, assessment scales, such as ALS functional rating scale-revised (ALSFRS-R), prognosis indicators, such as ALS progression rate, biomarker data, such as serum Neurofilament light chain (sNfL), genetic data, such as the mutation status of SOD1, FUS, c9orf72, TARDBP in ALS, SMN1 in SMA patients, innovative drugs such as Tofersen, Nusinersen, Risdiplam, as well as symptomatic drugs, patient-reported outcome data being captured using questionnaires and established clinical scales on medication expectation and treatment satisfaction.
Sex: All, ages: 18 Years to any
Inclusion Criteria: Diagnosis of a chronic neurological disease - Exclusion Criteria: Lack of cooperation and unwillingness to store and share medical data collected in the registry study \-
| Facility | City | Country | Status |
|---|---|---|---|
| Christoph Münch | Berlin, State of Berlin | Germany | |
| Neurologische Klinik und Poliklinik, Universitätsklinikum Bergmannsheil | Bochum | Germany | |
| Klinik für Neurodegenrative Erkrankungen und Gerontopsychiatrie, ALS-Ambulanz und Huntington Ambulanz, Universitätsklinikum | Bonn | Germany | |
| Klinik und Poliklinik für Neurologie, Medizinische Fakultät Carl Gustav Carus, Technischen Universität Dresden | Dresden | Germany | |
| Neurologische Klinik, ALS-Ambulanz, Alfried Krupp Krankenhaus Rüttenscheid, Essen | Essen | Germany | |
| Klinik für Neurologie, Universitätsmedizin, Georg-August-Universität Göttingen | Göttingen | Germany | |
| ALS- und Muskelambulanz, Medizinische Hochschule Hannover | Hanover | Germany | |
| Neurologie und Poliklinik, Universitätsklinikum | Heidelberg | Germany | |
| Ambulanz für Neuromuskuläre und Motoneuron-Erkrankungen, Universitätsklinikum Jena | Jena | Germany | |
| Klinik und Poliklinik für Neurologie | Leipzig | Germany | |
| Klinik für Neuroogie-Präzisionsneurologie, Universitätsklinikum Schleswig-Holstein, Universität zu Lübeck | Lübeck | Germany | |
| Neurologisches Klinik, Ambulanz für Motoneuronerkrankungen und ALS, Diakonissenkrankenhaus | Mannheim | Germany | |
| Universitätklinikum | Mannheim | Germany | |
| Klinik und Poliklinik für Neurologie, Klinikum rechts der Isar der Technischen Universität München | München | Germany | |
| Klinik für Schlafmedizin und Neuromuskuläre Erkrankungen, Westfälische Willhelms-Universität Münster | Münster | Germany | |
| Klinik für Innere Medizin, Neurologie, UKM Marienhospital Steinfurt | Steinfurt | Germany |