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Clinical trialNCT02686268CompletedObservational

Understanding Clinical Phenotype and Collecting Biomarker Samples in C9ORF72 ALS

SponsorWashington University School of MedicineEnrollment128C9ORF72 Amyotrophic Lateral Sclerosis (ALS)
View the registry record on ClinicalTrials.gov

Summary

The lay summary the sponsor registered on ClinicalTrials.gov.

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.
clinicaltrials.gov ↗

Investigators

The overall officials registered on this study. Names that resolve to a findmyKOL profile link to it; the rest are shown as registered.

A profile link is shown only when the registered name resolves to a person record with a confident, namesake-checked match; ambiguous names stay unlinked.

Sites

8 registered facilities, with the per-site recruitment status where the registry publishes one. ClinicalTrials.gov does not publish per-site enrollment counts.

Netherlands
  • Umc Utrecht

    Utrecht, Netherlands

United States
  • Cedars Sinai Medical Center

    Los Angeles, California, United States

  • Johns Hopkins

    Baltimore, Maryland, United States

  • University of Massachusetts

    Amherst, Massachusetts, United States

  • Massachusetts General Hospital

    Boston, Massachusetts, United States

  • Washington University in St. Louis

    St Louis, Missouri, United States

  • Columbia University Medical Center

    New York, New York, United States

  • Sentara Health Care / Sentara Neurology Specialists

    Virginia Beach, Virginia, United States

Site investigator names are published by ClinicalTrials.gov only while a study recruits, so completed studies list sites without them.

Drugs studied

No drug or biological interventions are in our data for this study. It may test a procedure, device or behavioral intervention, or the intervention list isn't in our current snapshot. See the registry record ↗. Why? →

Registration & key dates

Registry attributes as recorded on the ClinicalTrials.gov study record.

Start
28 Feb 2015
Primary completion
31 Dec 2017
Completion
2 Oct 2018
Last update posted
8 Jul 2021
Registered enrollment
128
Registry id
NCT02686268
clinicaltrials.gov ↗

Source: ClinicalTrials.gov, via the CTTI AACT database, data as of 24 Aug 2026. Registry facts are shown as registered by the study sponsor; findmyKOL does not interpret them.