Registry for assistive devices and treatments in ALS and SMA patients
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.
Ambulanzpartner Soziotechnologie APST GmbH · NCT05852418
This study collects information about the use of assistive devices and treatments for people with ALS and SMA to see how well they work and how patients feel about them.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 25000 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Ambulanzpartner Soziotechnologie APST GmbH (industry) |
| Locations | 16 sites (Berlin and 15 other locations) |
| Trial ID | NCT05852418 on ClinicalTrials.gov |
What this trial studies
This registry collects data on the use of assistive devices, medications, and healthcare measures for patients with Amyotrophic Lateral Sclerosis (ALS), Spinal Muscular Atrophy (SMA), and other neurological disorders. It aims to gather real-world evidence and patient-reported outcomes to better understand clinical practices. The study includes various data points such as clinical characteristics, medical history, assessment scales, biomarkers, and genetic information. By documenting these factors, the registry seeks to enhance the understanding of treatment effectiveness and patient experiences.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with chronic neurological diseases such as ALS or SMA.
Not a fit: Patients who are unwilling to cooperate or share their medical data will not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could improve the management and treatment of ALS and SMA by providing valuable insights into patient care and outcomes.
How similar studies have performed: Other studies have shown success in utilizing registry data to improve understanding and treatment of neurological diseases, making this approach both relevant and promising.
Eligibility criteria
Show full inclusion / exclusion criteria
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 \-
Where this trial is running
Berlin and 15 other locations
- Christoph Münch — Berlin, Germany (RECRUITING)
- Neurologische Klinik und Poliklinik, Universitätsklinikum Bergmannsheil — Bochum, Germany (RECRUITING)
- Klinik für Neurodegenrative Erkrankungen und Gerontopsychiatrie, ALS-Ambulanz und Huntington Ambulanz, Universitätsklinikum — Bonn, Germany (RECRUITING)
- Klinik und Poliklinik für Neurologie, Medizinische Fakultät Carl Gustav Carus, Technischen Universität Dresden — Dresden, Germany (RECRUITING)
- Neurologische Klinik, ALS-Ambulanz, Alfried Krupp Krankenhaus Rüttenscheid, Essen — Essen, Germany (RECRUITING)
- Klinik für Neurologie, Universitätsmedizin, Georg-August-Universität Göttingen — Göttingen, Germany (RECRUITING)
- ALS- und Muskelambulanz, Medizinische Hochschule Hannover — Hanover, Germany (RECRUITING)
- Neurologie und Poliklinik, Universitätsklinikum — Heidelberg, Germany (RECRUITING)
- Ambulanz für Neuromuskuläre und Motoneuron-Erkrankungen, Universitätsklinikum Jena — Jena, Germany (RECRUITING)
- Klinik und Poliklinik für Neurologie — Leipzig, Germany (RECRUITING)
- Klinik für Neuroogie-Präzisionsneurologie, Universitätsklinikum Schleswig-Holstein, Universität zu Lübeck — Lübeck, Germany (RECRUITING)
- Neurologisches Klinik, Ambulanz für Motoneuronerkrankungen und ALS, Diakonissenkrankenhaus — Mannheim, Germany (RECRUITING)
- Universitätklinikum — Mannheim, Germany (RECRUITING)
- Klinik und Poliklinik für Neurologie, Klinikum rechts der Isar der Technischen Universität München — München, Germany (RECRUITING)
- Klinik für Schlafmedizin und Neuromuskuläre Erkrankungen, Westfälische Willhelms-Universität Münster — Münster, Germany (RECRUITING)
- Klinik für Innere Medizin, Neurologie, UKM Marienhospital Steinfurt — Steinfurt, Germany (RECRUITING)
Study contacts
- Study coordinator: Thomas Meyer, Prof. Dr.
- Email: t.meyer@ambulanzpartner.de
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Amyotrophic Lateral Sclerosis, ALS Registry study, SMA Registry study, ALS medication and care registry study, SMA medication and care registry study, NfL, Neurofilament light chain, ALSFRS-R