Registry Collecting Routine Care Data for ALS, SMA and Motor Disorders
Collects routine care data from people with ALS, SMA and other motor disorders.
Plain-language title generated from the registry record
Registry title: Register for Medical Data, Functional Scales, and Care Outcomes in ALS, SMA, and Other Motor System Disorders
Key facts
- Where
- Berlin, GermanySee the site
Where in Germany
- Charité - Universitätsmedizin Berlin; Charité Centrum für Neurologie, Neurochirurgie und Psychiatrie; Ambulanz für ALS, SMA und andere MotoneuronerkrankungenBerlin, GermanyTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Ambulanzpartner Soziotechnologie APST GmbH
- Trial code
- NCT07900672
- Record updated
- 28 October 2026
- Original description
This observational registry collects existing medical and routine care data from people with amyotrophic lateral sclerosis (ALS), spinal muscular atrophy (SMA), and other motor system disorders. The registry includes information about disease course, functional abilities, medications, medical devices, therapeutic services, nutrition, breathing support, and nursing care. It may also include patients' assessments of their treatment and care.Read full original descriptionShow less
Register Zur Erfassung Medizinischer Daten, Funktioneller Skalen Und Von Verlaufsparametern in Der Hilfsmittel-, Heilmittel-, Beatmungs-, Ernährungs-, Medikamenten- Und Pflegeversorgung Von Patienten Mit Amyotropher Lateralsklerose (ALS), Spinaler Muskelatrophie (SMA) Und Anderen Motorischen Systemerkrankungen
This observational registry collects existing medical and routine care data from people with amyotrophic lateral sclerosis (ALS), spinal muscular atrophy (SMA), and other motor system disorders. The registry includes information about disease course, functional abilities, medications, medical devices, therapeutic services, nutrition, breathing support, and nursing care. It may also include patients' assessments of their treatment and care.
The main goal is to describe how people with these conditions are treated and supported in routine clinical practice. The collected data will be used to study care delivery, patient outcomes, and changes in care over time. The findings may help answer research questions and support the future development of treatment standards and clinical care guidelines.
This registry does not require any additional medical, nursing, or therapeutic intervention. It uses data generated during routine care and may include information reported by patients or a person authorized by them. The registry is operated by Ambulanzpartner Soziotechnologie APST GmbH in cooperation with Charité - Universitätsmedizin Berlin.
Inclusion: Patients aged 18 and over; Diagnosis of amyotrophic lateral sclerosis (ALS), spinal muscular atrophy (SMA), or another motor system disorders.
Exclusion: Inability or unwillingness to provide informed consent; Withdrawal of informed consent.