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