PATHOGENESIS IN C9ORF72-RELATED ALS (PiCALS)

Study Purpose:

This research seeks to identify what happens to healthy people who carry the gene mutation and to help scientists find a way to prevent ALS in gene carriers.

Disease:

Healthy Volunteer, Healthy Volunteer with a Family History of ALS

Study Type:

Observational Study

Study Category:

Study Status:

Enrolling

Phase:

Not Applicable

Study Chair(s)/Principal Investigator(s):

Clinicaltrials.gov ID (11 digit #):

Neals Affiliated?

No

Coordinating Center Contact Information

Emory ALS Center
Karon Simmons / .(JavaScript must be enabled to view this email address) / 404-712-4182
.(JavaScript must be enabled to view this email address) Atlanta, Georgia 30322 United States

Full Study Summary:

We’re looking for adults who are 18 years and older who are at risk for getting diagnosed with C9 ALS in the future.

This research seeks to identify what happens to healthy people who carry the gene mutation and to help scientists find a way to prevent ALS in gene carriers.

Participants will be asked to:

  • Meet with a Licensed Certified Genetic Counselor
  • Test for C9 ALS (saliva or blood draw)
  • Clinic office visits every 6 months for 1 year for Neurologic exam, Physical exam, Blood Draw and Lumbar Puncture

Study Sponsor:

Emory ALS Center

Participant Duration:

1 year

Estimated Enrollment:

Estimated Study Start Date:

Estimated Study Completion Date:

Posting Last Modified Date:

01/26/2022

Date Study Added to alsconsortium.org:

01/26/2022
  • More Information

    Click here to download a flyer containing more information.

  • Eligibility Criteria

    Gender:

    Female, Male

    Minimum Age:

    18

    Maximum Age:

    N/A

    Time since Symptom Onset:

    N/A

    Time since Diagnosis:

    N/A

    Can participants use Riluzole?


    ARE YOU ELIGIBLE

    • 18 years or older
    • Have a blood relative that was diagnosed with C9 ALS
      or
    • Carrier of C9orf72 gene and do not have symptoms of ALS

    PARTICIPANTS WILL RECEIVE

    Genetic testing provided at no cost (results will be offered)
    Genetic counseling provided at no cost

  • Site Contact Information

    Emory ALS Center
    Karon Simmons / .(JavaScript must be enabled to view this email address) / 404-712-4182
    Atlanta, Georgia 30322
    United States