Research and patient care may quickly stop at 14 of the country's Alzheimer's Disease Research Centers (ADRCs) due to lack of funds.
Funding has effectively been halted at 14 of the nation's 35 ADRCs after the Trump administration repeatedly canceled NIH advisory council meetings, the final step required in the ADRC grant approval process.
"The 14 ADRCs remain in limbo," Alzheimer's researcher Ann Cohen, PhD, of the University of Pittsburgh, told MedPage Today.
Some of the 14 centers' grants have already ended, and some will run out on March 31. "Importantly, the final group of this cohort of 14 will run out of funding on April 30," Cohen said.
ADRCs are Centers of Excellence designated by Congress that provide local resources, support, and opportunities to participate in Alzheimer's and dementia research. The centers were first established in 1984 and focus on specific areas of interest like Alzheimer's disease, frontotemporal dementia, vascular dementia, or Lewy body disease. Through the National Institute on Aging (NIA), the NIH funds 35 ADRCs at research institutions in 24 states.
The centers help local patients obtain a diagnosis, manage care, and learn about active clinical trials. Each center has a clinical core of research participants who come to the ADRC annually as part of a long-term study of aging and the brain.
ADRCs are funded in waves -- 14 are up for renewal now; some were funded last year, and some should be funded next year.
There are significant downstream effects of NIH funding delays, Cohen noted. "The ADRCs have highly specialized healthcare providers who are trained in dementia care," she said. "If these individuals have to seek other careers outside of this field, the loss to patients, their families, and the healthcare system would be tremendous."
Funding delays already are slowing or stopping Alzheimer's research, Cohen pointed out. Many centers have already reduced the procedures participants undergo, using fewer expensive tests like imaging or blood-based biomarkers, she noted.
"This is both scientifically damaging -- because you are reducing the data collected for analysis -- and damaging to patients and their families because many of these procedures are very important to clinically evaluate a patient and may provide additional information that can clarify diagnosis or treatment plans," she said.
"ADRCs are one of the most important infrastructure pieces of the efforts in the field to recruit and train more health providers and researchers in dementia care and research," Cohen emphasized. "Without this infrastructure, highly talented clinicians and researchers will likely identify other areas of practice or research due to the instability in the field."
How ADRCs Work
ADRCs also share data and samples with connected repositories. The National Alzheimer's Coordinating Center collects standardized data from all centers for qualified investigators to use. ADRCs send biological samples to the National Centralized Repository for Alzheimer's Disease and Related Dementias, genetic information to the Alzheimer's Disease Genetics Consortium, and brain MRI and PET data to the Standardized Centralized Alzheimer's and Related Dementias Neuroimaging.
"The ADRC system at 35 major academic medical centers comprises the most qualified research workforce in the world working on the problem of Alzheimer's disease and related causes of neurodegeneration," Sterling Johnson, PhD, of the Wisconsin Alzheimer's Disease Research Center in Madison, told MedPage Today.
"Collectively, the centers follow 18,000 dementia patients and healthy volunteers," Johnson said.
The centers enable scientists to use their infrastructure and resources, he pointed out. "Rather than building that in a duplicate way from lab to lab, scientists can utilize these shared resources to ask more far-reaching questions and do higher-impact studies that they could have done on their own. That's a major function of the program -- to provide that infrastructure and amplify what scientists are doing locally by activating these key resources for their studies."
The recent discovery of an Alzheimer's mimic known as limbic-predominant age-related TDP-43 encephalopathy (LATE) came from research based on contributions of ADRCs, for example.
"More and more, our centers are studying how Alzheimer's and dementia evolve in different communities. We need to know more about the 20-year phase when Alzheimer's disease is evolving and when we can intervene and prevent symptoms," Johnson added.
"We need to know what this looks like in Hispanic communities, in Latino communities. What does it look like in African-American communities? We need to understand those things because this disease affects those communities about one and a half to two times as often as it does non-Hispanic white populations," he said.
The work of the ADRCs is a rock-solid foundation on which the Alzheimer's and dementia research field is based, noted Maria Carrillo, PhD, chief science officer and medical affairs lead of the Alzheimer's Association.
"We are deeply concerned that stalled approval of funding to the ADRCs will jeopardize scientific and medical progress," Carrillo told MedPage Today.
"The ADRCs are part of vital government, industry, academic, and nonprofit partnerships -- including important clinical trials -- that the individual organizations could not achieve on their own," Carrillo observed. "By participating in local, national, and international research, the ADRCs have contributed to significant advances in diagnosis, treatment, clinical care, and risk reduction."
More Research in Jeopardy
Other major Alzheimer's and dementia studies also are in jeopardy. Longstanding cohort studies -- like the Dominantly Inherited Alzheimer Network-Trials Unit (DIAN-TU), which informs prevention and treatment efforts for all forms of Alzheimer's disease -- still await NIH funding.
The NIA supports about 500 clinical trials, mostly centered around dementia care, and it's not clear which of these efforts will continue. Some NIH study sections to discuss Alzheimer's clinical trials and other research have been rescheduled after being cancelled more than once.
About 10% of employees at the NIH's intramural Center for Alzheimer's and Related Dementias (CARD) -- a collaborative initiative of the NIA and National Institute of Neurological Disorders and Stroke (NINDS) -- have been fired, including its next acting director.
The NIH also is removing some of its scientific advisers, academic experts appointed for 5-year periods to oversee research at agencies like the NIA.
"There has been such incredible hope and progress in the Alzheimer's disease research field, with the first disease-modifying treatments and accurate blood tests now available," an Alzheimer's researcher told MedPage Today, speaking on the condition of anonymity.
"The future seemed much brighter and an end to Alzheimer's almost seemed possible. But now it seems that the infrastructure we have built so carefully over decades is being burned down," the researcher continued.
"I don't know if or when the public will understand how much is being lost, or how difficult it will be to rebuild what we had at the beginning of 2025. The future is much darker for patients with Alzheimer's disease, and it is terribly sad."
Judy George covers neurology and neuroscience news for MedPage Today, writing about brain aging, Alzheimer’s, dementia, MS, rare diseases, epilepsy, autism, headache, stroke, Parkinson’s, ALS, concussion, CTE, sleep, pain, and more. Follow