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Recruiting
NCT07900672
Register for Medical Data, Functional Scales, and Care Outcomes in ALS, SMA, and Other Motor System Disorders
Conditions: ALS (Amyotrophic Lateral Sclerosis), SMA - Spinal Muscular Atrophy, Spinal Cord Diseases, Central Nervous System Diseases, Nervous System Diseases, Motor Neuron Disease, Neurodegenerative Diseases, TDP-43 Proteinopathies, Neuromuscular Diseases (NMD), Proteostasis Deficiencies, Metabolic Diseases, Nutritional and Metabolic Diseases, Charcot-Marie-Tooth Disease Type 1F
Sex: All
Enrollment: 2000
Sponsor: Ambulanzpartner Soziotechnologie APST GmbH
Location: Charité - Universitätsmedizin Berlin; Charité Centrum für Neurologie, Neurochirurgie und Psychiatrie; Ambulanz für ALS, SMA und andere Motoneuronerkrankungen Berlin State of Berlin
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.
Eligibility 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
Source: ClinicalTrials.gov (NCT07900672). StuddyBuddy aggregates publicly available trial information.