This watch-and-measure (no experimental treatment required) 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.
Official registry: https://clinicaltrials.gov/study/NCT07900672 · Ambulanzpartner Soziotechnologie APST GmbH · enrollment listed as 2,000
This is an observational study. You are not assigned a new experimental drug. Researchers measure what already happens in your care or in daily life.
Phase labels are FDA/ICH categories applied to the registry Phase field. They are not a finding that this study succeeded.
This listing is observational (StudyType). The registry does not assign a new experimental drug as the study intervention.
They plan to enroll about 2,000 people at Berlin. Taking part typically means study visits and measurements plus check-ins.
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
Interventions: Standard of Care (Investigator Choice)
Primary outcome (registry wording): Number and Percentage of Participants Receiving Each Type of Routine Care Intervention at Enrollment
Marie-Therese Henke
Published on ClinicalTrials.gov. Contact them as a possible participant. They decide eligibility.
We will investigate the clinical manifestations and molecular genetic defects of heritable urologic malignant disorders. Families with urologic malignancy with known or suspected genetic basis will be enrolled.
NCT00001238 · Official ClinicalTrials.gov record · National Cancer Institute (NCI)
This protocol will evaluate patients with systemic lupus erythematosus (SLE) and their relatives to learn more about how the disease develops and changes over time. It will also study genetic factors that make a person susceptible to SLE.
NCT00001372 · Official ClinicalTrials.gov record · National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
This study is designed to explore the genetics and pathophysiology of diseases presenting with intermittent fever, including familial Mediterranean fever, TRAPS, hyper-IgD syndrome, and related diseases. The following individuals may be eligible for this natural history study: 1) patients with known or suspected familial Mediterranean fever, TRAPS, hyper-IgD syndrome or related disorders; 2) relatives of these patients; 3) healthy, normal volunteers 7 years of age or older.
NCT00001373 · Official ClinicalTrials.gov record · National Human Genome Research Institute (NHGRI)
The sponsor posted status “Recruiting” on ClinicalTrials.gov at last ingest. Sites can pause independently. Confirm with the official record and the listed contact.
Not a traditional drug phase. Phase labels are FDA/ICH categories applied to the registry Phase field. They are not a finding that this study succeeded.
No. The inclusion and exclusion lists on this page are readable extracts of the public eligibility block. Only the study team can screen you.
How to read a ClinicalTrials.gov record · Questions to ask the coordinator · Glossary