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