Registering medical data and care outcomes for ALS, SMA, and other motor disorders
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
Run by Ambulanzpartner Soziotechnologie APST GmbH · NCT07900672 · Data updated 2026-11-12
This registry slowly collects routine-care information from adults with ALS, SMA, or other motor disorders to see how they’re treated and how care affects outcomes.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 2000 (estimated) |
| Sponsor | Ambulanzpartner Soziotechnologie APST GmbH Industry-sponsored |
| Locations | 1 site (Berlin, State of Berlin) |
| Status | Recruiting |
| Started | October 1, 2026 |
| Main results expected | December 31, 2035 |
| Study ends | December 31, 2035 |
| Registry record updated | October 28, 2026 |
| Trial ID | NCT07900672 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Adults (18+) with ALS, SMA, or other motor system disorders who are receiving routine care.
✕Probably not a fit
Patients not willing or able to provide informed consent may not benefit from the registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This is an ongoing, non-interventional registry that gathers routine medical data from adults with ALS, SMA, and related motor system disorders. Data come from medical records, patient or clinician data forms, and authorized software used in routine care, stored on a protected server in Berlin. The project uses a core dataset plus optional variables to describe demographics, diagnoses, disease features, functional status, devices, therapies, medications, respiratory and nutritional support, nursing care, and patient experiences. The goal is to describe current care delivery and patient outcomes to inform future guidelines and standards. No extra medical interventions are required beyond standard care, and patient-entered data is collected only with explicit consent.
Why it matters
Potential benefit: If successful, the registry could improve understanding of real-world care and guide improvements in treatment standards and clinical guidelines.
How similar studies have gone: Similar patient registries have provided valuable real-world insights for motor neuron diseases, supporting the approach's relevance.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients aged 18 and over * Diagnosis of amyotrophic lateral sclerosis (ALS), spinal muscular atrophy (SMA), or another motor system disorders Exclusion Criteria: * Inability or unwillingness to provide informed consent * Withdrawal of informed consent
Where it's running
-
Charité - Universitätsmedizin Berlin; Charité Centrum für Neurologie, Neurochirurgie und Psychiatrie; Ambulanz für ALS, SMA und andere Motoneuronerkrankungen
Berlin, State of Berlin, Germany Recruiting
Study contacts
- Study coordinator: Marie-Therese Henke
- Email: m.henke@ambulanzpartner.de
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.