In-Person Research Testing
What is Research Testing?
Anonymity
Where is it available?
In depth longitudinal studies for those at risk of carrying ALS & FTD related variants usually require (free) genetic counselling to participate, and allow an optional rolling choice for the participant to find out their genetic status through genetic testing should they deisre to. These studies are in person and require scheduling a full day ahead of time to come in. The type of testing in research is not held to the same scrutiny as medical testing. In these studies, samples you donate may be tested whether you decide to find out or not, but the research team you interact with does not find out unless you choose to find out.
Research testing is often anonymous - meaning your name is not tied to the result and it is not in your medical record. This is not universal so you must confirm this with a prospective study if it is important to you.
In the United States the following in person studies offer this: DIALS , Pre-FALS, ALS Families Project and ALLFTD. To see all research studies for the at risk community see our "Research Studies" page linked below.