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Register for Medical Data, Functional Scales, and Care Outcomes in ALS, SMA, and Other Motor System Disorders
Sponsor: Ambulanzpartner Soziotechnologie APST GmbH
Summary
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.
Official title: 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
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
2000
Start Date
2026-10-01
Completion Date
2035-12-31
Last Updated
2026-10-28
Healthy Volunteers
Not specified
Conditions
Interventions
Standard of Care (Investigator Choice)
This is a non-interventional patient registry. No investigational treatment, procedure, or care strategy is assigned. Participants continue to receive routine care determined by their treating health care professionals. The registry collects historical, current, and future routine-care data from medical records, questionnaires, and, with explicit consent, data exported from software or mobile applications such as the ALS App or SMA App. These applications are not tested or evaluated as interventions in this study. Data may cover medical history, disease course, functional status, medications, assistive devices, therapeutic services, respiratory and nutritional support, and nursing care.
Locations (1)
Charité - Universitätsmedizin Berlin; Charité Centrum für Neurologie, Neurochirurgie und Psychiatrie; Ambulanz für ALS, SMA und andere Motoneuronerkrankungen
Berlin, State of Berlin, Germany