NCT07900672

Register for Medical Data, Functional Scales, and Care Outcomes in ALS, SMA, and Other Motor System Disorders

StatusRecruiting

PhaseNot specified

SponsorAmbulanzpartner Soziotechnologie APST GmbH

Primary completionDec 31, 2035 (estimated)

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Record History

All 1 version: 1 with changes below.

Oct 26, 2026 Study First Submitted

Endpoints

Primary

Number and Percentage of Participants Receiving Each Type of Routine Care Intervention at Enrollment

Timeframe: At enrollment

Arms and interventions

Other: Standard of Care (Investigator Choice)

Sites

1 site in 1 country

Charité - Universitätsmedizin Berlin; Charité Centrum für Neurologie, Neurochirurgie und Psychiatrie; Ambulanz für ALS, SMA und andere MotoneuronerkrankungenBerlin, State of Berlin, Germany

About this trial

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.

Trial details

Enrollment: 2,000 participants (estimated)
Started: Oct 1, 2026
Study completion: Dec 31, 2035 (estimated)
Eligibility: all ages, all sexes
Design: Observational
Conditions: Amyotrophic Lateral Sclerosis, Central Nervous System Diseases, Charcot-Marie-Tooth disease, Type 1F, Metabolic Diseases, Motor Neuron Disease, Muscular Atrophy, Spinal, Nervous System Diseases, Neurodegenerative Diseases +8 more
Collaborators: Charite University, Berlin, Germany
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
First posted: Oct 28, 2026
Registry updated: Oct 28, 2026
Last verified: Sep 2026

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