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 For those At Risk
34 Planned across the United States
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
Amyotrophic Lateral Sclerosis Type 4
Philadelphia PA - no website, call 215-503-0527
Mayo Jacksonville Study - Florida
Everything ALS Gene Carrier Study
We especially encourage you to consider enrolling in research at centers where At Risk Care is prioritized. See those centers here.
Recruiting Observational Studies outside the United States For those At Risk
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 Symptomatic Interventional Studies For GRN
AVIADO Bio FTD GRN Trial
FTD GRN Trial
FTD GRN Trial Passage Bio
GRN FTD AAV Trial
Recruiting Symptomatic Interventional Studies For SOD1
Uniqure AAV Trial
Regeneron SOD1 MRNA Trial