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Alzheimer's research network DIAN faces funding uncertainty amid NIH cuts

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Uncertain Future for Landmark Alzheimer's Research Network

The Dominantly Inherited Alzheimer Network (DIAN) , a global registry of families with rare gene mutations that cause early-onset Alzheimer's disease, faces an uncertain future due to federal funding cuts and delays. The network is currently maintaining only essential functions while awaiting word on critical NIH grants.

"The families are the only population in the world where we not only have certainty about whether they will get it, but when they will get it."
— Dr. Randall Bateman, DIAN co-director

Key Details

  • DIAN includes over 200 families in 18 countries carrying mutations that virtually guarantee Alzheimer's onset before age 65.
  • The network has enabled discoveries about Alzheimer's progression, drug effects, and protective factors.
  • A grant renewal for $13 million was rejected; bridge funding of about $8 million was provided instead.
  • International site funding from NIH has ended; temporary support comes from the Alzheimer's Association.
  • A grant review expected in January/February 2025 was pushed to May 2025—weeks before bridge funding ends.

Background

DIAN was established in 2008 with NIH funding to study families with dominant Alzheimer's mutations. It later formed a clinical trials unit (DIAN-TU). Studies using DIAN participants helped develop amyloid-reducing drugs lecanemab and donanemab and showed that early amyloid reduction may delay symptoms.

"What we've seen with the amyloid therapies is how important this DIAN cohort is."
— Dr. Tammie Benzinger, radiology professor at Washington University

A Community on the Brink

For Lindsay, a DIAN family member and neuroscientist, the stakes are deeply personal.

"I 100% believe that the first Alzheimer's survivor will be from this community."

She noted that the network's future depends entirely on continued funding. Without it, the progress enabled by this unique population—one that offers researchers a rare window into the disease's predictable progression—could stall indefinitely.