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Clinical characteristics, natural history, health care measures, and the frequency of genetic variants in the genes of SOD1, C9orf72, FUS and TARDBP in patients with sporadic and familial amyotrophic lateral sclerosis (ALS)

Clinical characteristics, natural history, health care measures, and the frequency of genetic variants in the genes of SOD1, C9orf72, FUS and TARDBP in patients with sporadic and familial amyotrophic lateral sclerosis (ALS)

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
DRKS
Registry ID
DRKS00032090
Enrollment
2000
Registered
2023-06-27
Start date
2021-10-01
Completion date
Unknown
Last updated
2025-10-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

G12.2

Interventions

Group 1: Observational study-Patients with sporadic ALS (sALS), which refers to those without a family history of ALS, are typically not subjected to genetic investigations as part of their standard c

Sponsors

Ambulanzpartner Soziotechnologie APST GmbH
Lead Sponsor

Eligibility

Sex/Gender
All
Age
18 Years to No maximum

Inclusion criteria

Inclusion criteria: ALS, including classical ALS, Progressive Muscle atrophy (PMA) or Primary Lateral Sclerosis (PLS) Ability to understand the purpose and risks of the study and provide signed and dated informed consent and authorization to use protected health information (PHI) under national and local subject privacy regulations Age of 18 years old at the time of informed consent

Exclusion criteria

Exclusion criteria: Inability to provide patient directives about the notification of individual study results on genetic variants of SOD1, C9orf72, FUS and TARDBP Inability to comply with study requirements Unspecified reasons that, in the opinion of the site investigator, perceive the subject as unsuitable for enrollment

Design outcomes

Primary

MeasureTime frame
•To identify the frequency of genetic variants in the genes of SOD1, C9orf72, FUS and TARDBP in patients with sALS and fALS-Study subjects will have up to 3 assessments, with a 4-month interval for approximately one year.

Secondary

MeasureTime frame
•To investigate the demographic and social characteristics •To investigate the family history for ALS or FTD •To investigate the clinical classification, functional deficits and progression

Countries

Germany

Contacts

Public ContactThomas Meyer

CHARITÉ - UNIVERSITÄTSMEDIZIN BERLIN

thomas.meyer@charite.de030450560028

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026