CompletedNot Applicable

Understanding Clinical Phenotype and Collecting Biomarker Samples in C9ORF72 ALS

United States128 participantsStarted 2015-02

Plain-language summary

This research study is being performed to better understand a specific form of Amyotrophic Lateral Sclerosis (ALS) caused by a mutation (or abnormality) of the C9ORF72 gene. This mutation is the most common genetic cause of ALS, and is present in 40% of ALS patients with a family history of ALS and 5-10% of ALS patients without a family history of ALS.

Who can participate

Age range18 Years

SexALL

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Inclusion criteria

✓. Males or females of any race aged 18 or older
✓. Known positive C9ORF72 ALS status via CLIA-certified lab results.
✓. Capable of providing informed consent and following study procedures. In the event that an individual lacks the ability to provide informed consent, informed consent may be sought from the individual's legal, surrogate representative.
✓. Geographically accessible to the site.

Exclusion criteria

✕. Geographically inaccessible to the site
✕. C9ORF72 ALS negative via CLIA-certified lab results

What they're measuring

Collection of clinical data and biomarker samples

Timeframe: December 2017

Trial details

NCT IDNCT02686268

SponsorWashington University School of Medicine

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2017-12-31

View on ClinicalTrials.gov More C9ORF72 Amyotrophic Lateral Sclerosis (ALS) trials