What data do we collect?
All data submitted through ARC is de-identified and you have the
option to choose what data you submit.
By signing up for ARC, you may be asked for data related to:
Personal background
Complete surveys on topics such as family history, geography,
lifestyle, medical history, occupation and your ALS experience.
Electronic Health Records
You have the option to easily integrate your Electronic Health
Records (EHRs) into the ARC study. An EHR is an electronic version
of a patient's history and care that is maintained by their medical
provider over time.
Speech Tracking
Record a few sample phrases each month to assess changes in
your speech.
Movement tracking
Participants who meet specific criteria* will be provided with
accelerometers on a monthly basis to quantify movement.
Sample collection
Participants who meet specific criteria* will be provided with
an in-home blood kit or other types of sample collection kits.
ALSFRS-R tracking
Complete an online ALSFRS-R** form once a month.
Genetic testing***
Participants who meet specific criteria* will be provided
with genetic testing information.
*If you meet these criteria, you will be contacted by a member of our Clinical Operations Team
**The Revised ALS Functional Rating Scale (ALSFRS-R) is a questionnaire-based scale used to
measure participant s ability to perform physical activities in everyday life
***Genetic testing for the ARC study does not provide a clinical-grade genetic test