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.

Study Status:

Recruiting

Disease:

Healthy Volunteer , Healthy Volunteer with a Family History of ALS

Study Type:

Observational

Type of Intervention:

N/A

Intervention Name:

N/A

Placebo:

N/A

Phase:

N/A

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

N/A

Clinicaltrials.gov ID:

Neals Affiliated?

No

Coordinating Center Contact Information

Emory ALS Center

Karon Simmons / email hidden; JavaScript is required / 404-712-4182

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

Posting Last Modified Date:

01 / 26 / 2022

Date Study Added to neals.org:

01 / 26 / 2022

Click here to download a flyer containing more information.

Accepts healthy volunteers:

Yes

Minimum Age:

18

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

Emory ALS Center

Karon Simmons / 404-712-4182 / email hidden; JavaScript is required

Atlanta, Georgia 30322
United States