Recruiting Studies with a Genetic ALS or FTD Focus
We strive to keep these up to date but know there will be a lag when changes are made to recruiting status. Please double check before assuming a study is still open or not open. If you have feedback contact us at info@endthelegacy.org
Recruiting Observational Studies in the United States
Barrow Neurological Site, Arizona Email: fulton.research@dignityhealth.org to enroll
The DIALS (Dominant Inherited ALS) Network - Boston and St Louis
ALS Families Project - New York City
ALLFTD - 18 sites across United States and Canada
Pre-FALS - Miami
Pathogenesis in C9ALS (PICALS) - Georgia
ARC from ALS TDI - Remote
UPenn Observational Research Repository on Neurodegenerative Disease (UNICORN) - Pennsylvania
Study of Longitudinal Microbiome in ALS - Boston and Remote
Recruiting Observational Studies outside the United States
PremodiALS - Many Sites in Europe
ALLFTD - 18 sites across United States and Canada
GENFI - Sites across Europe and Canada
ACORN C9orf72 Study - Sites in UK
Recruiting Pre-Symptomatic Interventional Studies
ATLAS Study for SOD1 - Trial for certain Presymptomatic Sod1 Carriers , Sites across the world.
Recruiting Symptomatic Interventional Studies For GRN
AVIADO Bio FTD GRN Trial
FTD GRN Trial
FTD GRN Trial Passage Bio
GRN FTD AAV Trial