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Registry Study of Assistive Devices, Medicines and Healthcare Measures in ALS, SMA and Other Neurological Diseases.

NCT ID: NCT05852418

Last Updated: 2025-01-29

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

25000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2015-10-30

Study Completion Date

2029-06-30

Brief Summary

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This registry study aims to collect data on the provision of assistive devices, medicines, and other healthcare measures, such as ventilation therapy and nutrition support, in patients with Amyotrophic lateral sclerosis (ALS), Spinal muscular atrophy (SMA) and other neurological disorders. The data collected should describe the clinical practice, meaning real-world evidence and patient-reported outcomes.

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Detailed Description

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This registry study aims to collect data on the provision of assistive devices, medicines, and other healthcare measures, such as ventilation therapy and nutrition support, in patients with ALS, SMA and other neurological disorders. The data collected should describe the clinical practice, meaning real-world evidence and patient-reported outcomes. The collected data include clinical characteristics, medical history, assessment scales, such as ALS functional rating scale-revised (ALSFRS-R), prognosis indicators, such as ALS progression rate, biomarker data, such as serum Neurofilament light chain (sNfL), genetic data, such as the mutation status of SOD1, FUS, c9orf72, TARDBP in ALS, SMN1 in SMA patients, innovative drugs such as Tofersen, Nusinersen, Risdiplam, as well as symptomatic drugs, patient-reported outcome data being captured using questionnaires and established clinical scales on medication expectation and treatment satisfaction.

Conditions

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Amyotrophic Lateral Sclerosis

Study Design

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Observational Model Type

COHORT

Study Time Perspective

OTHER

Eligibility Criteria

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Exclusion Criteria

\-
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Charite University, Berlin, Germany

OTHER

Sponsor Role collaborator

Ambulanzpartner Soziotechnologie APST GmbH

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Thomas Meyer, Prof. Dr.

Role: STUDY_DIRECTOR

Ambulanzpartner Soziotechnologie APST GmbH

Locations

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Christoph Münch

Berlin, , Germany

Site Status RECRUITING

Neurologische Klinik und Poliklinik, Universitätsklinikum Bergmannsheil

Bochum, , Germany

Site Status RECRUITING

Klinik für Neurodegenrative Erkrankungen und Gerontopsychiatrie, ALS-Ambulanz und Huntington Ambulanz, Universitätsklinikum

Bonn, , Germany

Site Status RECRUITING

Klinik und Poliklinik für Neurologie, Medizinische Fakultät Carl Gustav Carus, Technischen Universität Dresden

Dresden, , Germany

Site Status RECRUITING

Neurologische Klinik, ALS-Ambulanz, Alfried Krupp Krankenhaus Rüttenscheid, Essen

Essen, , Germany

Site Status RECRUITING

Klinik für Neurologie, Universitätsmedizin, Georg-August-Universität Göttingen

Göttingen, , Germany

Site Status RECRUITING

ALS- und Muskelambulanz, Medizinische Hochschule Hannover

Hanover, , Germany

Site Status RECRUITING

Neurologie und Poliklinik, Universitätsklinikum

Heidelberg, , Germany

Site Status RECRUITING

Ambulanz für Neuromuskuläre und Motoneuron-Erkrankungen, Universitätsklinikum Jena

Jena, , Germany

Site Status RECRUITING

Klinik und Poliklinik für Neurologie

Leipzig, , Germany

Site Status RECRUITING

Klinik für Neuroogie-Präzisionsneurologie, Universitätsklinikum Schleswig-Holstein, Universität zu Lübeck

Lübeck, , Germany

Site Status RECRUITING

Neurologisches Klinik, Ambulanz für Motoneuronerkrankungen und ALS, Diakonissenkrankenhaus

Mannheim, , Germany

Site Status RECRUITING

Universitätklinikum

Mannheim, , Germany

Site Status RECRUITING

Klinik und Poliklinik für Neurologie, Klinikum rechts der Isar der Technischen Universität München

München, , Germany

Site Status RECRUITING

Klinik für Schlafmedizin und Neuromuskuläre Erkrankungen, Westfälische Willhelms-Universität Münster

Münster, , Germany

Site Status RECRUITING

Klinik für Innere Medizin, Neurologie, UKM Marienhospital Steinfurt

Steinfurt, , Germany

Site Status RECRUITING

Countries

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Germany

Central Contacts

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Thomas Meyer, Prof. Dr.

Role: CONTACT

[email protected]

Senthil Kumar Subramanian, Dr.

Role: CONTACT

[email protected]
+4930810314118

Facility Contacts

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Christoph Münch, Prof. Dr.

Role: primary

[email protected]
+49 (0)30 450 560132

Provided Documents

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Document Type: Study Protocol and Statistical Analysis Plan

View Document

Other Identifiers

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EA1/219/15

Identifier Type: -

Identifier Source: org_study_id

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