Research studies and clinical trials for familial Alzheimer's disease
A Youngtimers Guide ・ Last Reviewed Nov 12 2025
DIAN Expanded Registry ⧉: an email listserv that helps participants stay up to date on research and study-related opportunities. It also helps researchers find participants who might be interested in clinical trials. Open to anyone who has or had a family member with FAD.
Status: actively enrolling.
DIAN Observational Study ⧉ – monitors people over time who carry or who are at risk of carrying a gene mutation (in PSEN1, PSEN2, or APP) that causes FAD.
Status: actively enrolling.
DIAN-TU Primary Prevention Trial ⧉ (DIAN-TU-002)– Uses investigational drug remternetug, an anti-amyloid antibody that is given subcutaneously (under the skin), to test whether it is possible to prevent amyloid in the brains of people who are at risk of FAD, and if doing so early enough will prevent dementia. Open to people who are asymptomatic and are 11–25 years away from their parent’s age of symptom onset.
Status: actively enrolling.
DIAN-TU Secondary Prevention Trials ⧉ – Tests whether it is possible to stop the disease process before permanent damage occurs in the brains of FAD mutation carriers. Open to people who are asymptomatic and mildly symptomatic (within 10 years to symptom onset or 10 years past symptom onset)
DIAN-TU-001・E2814 ・”Tau NexGen” ⧉ - Tests lecanemab (an anti-amyloid antibody) and E2814 (an anti-tau antibody) that is given intravenously (i.v.).
Status: no longer enrolling
Expected to be completed in 2028.
DIAN-TU-003・ART ・ “Amyloid Removal Trial” ⧉ - An open-label study to treat FAD mutation carriers from the DIAN-TU-001 gantenerumab OLE period with lecanemab for a minimum of 5 years.
Status: no longer enrolling.
DIAN-TU-001・Solanezumab/Gantenerumab Trial ⧉ - From 2012-2020, this trial investigated the effectiveness and safety of two amyloid drug treatments (solanezumab and gantenerumab) in FAD mutation carriers in the US and globally. From 2020-2023, there was an open-label extension (OLE) period in which all participants who tested positive for an FAD mutation were given gantenerumab.
Status: study completed.
UCSF Development in Families with Neurodegenerative Disease ⧉ -To understand the brain development in children from FAD families. Open to children between ages 7-17.
Status: actively enrolling.
Other international research opportunities for people with FAD (as of September 2025)
Colombia: API Autosomal Dominant Alzheimer’s Disease (ADAD) Colombia Trial
Studies in Columbia are centered around carriers of the PSEN1 E280A (“Paisa”) mutation. This extended family represents the world’s largest ADAD kindred.
Crenezumab ⧉ - From 2013-2017, the trial investigated the effectiveness and safety of an amyloid drug treatment (crenezumab).
Status: study completed.
Donanemab + RG6289R ⧉ - From 2026-2030, the trial will evaluate the effectiveness and safety of an amyloid drug (donanemab ⧉) and a gamma secretase modulator (RG6289 ⧉) or a combination of both.
Status: coming soon.
Europe
Tau-lowering Drug NIO752 Trials: From 2023-2028, two trials will evaluate the effect, safety, and tolerability of an anti-sense oligonucleotide (ASO) against tau in PSEN1 and APP mutation carriers who are symptomatic. An ASO is a short, synthetic strand of DNA or RNA designed to target and reduce the production of harmful proteins.
Study details
Status: ?
Find more studies
ClinicalTrials.gov is a public database of clinical research studies, including their results. It is maintained by the U.S. National Library of Medicine (NLM) at the National Institutes of Health (NIH) and serves as a registry for both federally and privately supported studies worldwide.
To find studies relevant to our community, use the Condition/Disease field to search for FAD-specific terms like “Autosomal Dominant Alzheimers Disease”, “Familial Alzheimers Disease”, “PSEN1 Mutation”, “PSEN2 Mutation”, or “APP Mutation.”
Ask the Expert Videos: Familial Alzheimer’s Disease Research
