“If you want to do something to hasten a cure for Alzheimer’s, join the Brain Health Registry,” said Michael W. Weiner, M.D.
A professor of radiology and biomedical engineering, medicine, psychiatry and neurology at the University of California, San Francisco (UCSF), Weiner is the principle investigator of the Brain Health Registry (BHR) and the National Institutes of Health (NIH)-funded Alzheimer's Disease Neuroimaging Initiative (ADNI)—a 14-year longitudinal study of over 1,500 subjects at 60 sites across the United States and Canada and one of the largest observational studies in the world using MRI, PET and biomarkers to study Alzheimer's Disease.
Photo Courtesy of the University of California, San Francisco (UCSF).
Weiner launched BHR five years ago as a low-cost, scalable approach in response to the “very expensive, high tech approach” of ADNI to studying Alzheimer’s. The BHR’s questionnaires and brain tests serve as tools that help researchers identify normal elderly people at risk for cognitive decline and dementia and provide data to facilitate the work of other investigators.
“I have been doing research for 50 years. I have been doing Alzheimer’s research for 25 years,” he said. “The overall goal of our field is to identify people at risk of developing Mild Cognitive Impairment and dementia and to help develop treatments to prevent them. But one reason the research is going slow is that we are not getting enough volunteers for research studies. We want everyone. We want African American, Spanish and Asian people. We want blue collar, white collar, working people, high school graduates, college graduates and those with advance degrees. We want our registry to look like America.”
Over 62,000 participants have already enrolled in the BHR, and scientists hope to grow that number to 100,000 or more this year. Through a series of questionnaires and brains tests involving about 30 minutes of a participant's time twice a year, the BHR can observe and study brain health changes over time and then use that information to accelerate brain health research. Anyone 18 years and older can join the BHR—including healthy people, people with health or memory concerns, people with brain disease, and people with or without a history of brain disease in their family.
Since October 2014, when the BHR began inviting participants back biannually to complete follow-up questionnaires and retake brain tests, over half of enrolled participants have returned at least once, helping researchers to observe trends in brain health that unfold slowly over years.
A web-based, observational research study, and the first large-scale neuroscience project that leverages online possibilities in this way, the BHR was designed to capture large amounts of data that enable researchers to more efficiently identify, assess and monitor over time the cognitive changes associated with the progression of neurodegenerative diseases and brain aging.
Apart from long-term data collection, the BHR has referred over 23,000 interested participants to other research studies of brain health, aging and dementia, including clinical trials.
“We want everybody to join Brain Health Registry for a variety of reasons,” Weiner said. “My own focus is on the elderly and people over 60, but we are very collaborative. We will provide our data to any investigator who wants it. And people are interested in all sorts of things."
Weiner said other researchers and institutions can and have used the data for their own research into such areas as sleep disorders and cognition, autism and the aging process in general. “We are also interested in seeing what the natural aging process looks like, and the only way to do that is to compare young people to older people,” Weiner said. “With the Brain Health Registry, we can do that.”
Researchers at UCSF are sensitive to privacy concerns, and the identities of participants are never shared unless the individual gives permission to do so, Weiner said. And because the BHR is overseen by UCSF, all of its study activities are approved and regulated by the UCSF Institutional Review Board (IRB), or ethics board.
Participants in the BHR complete online questionnaires and tests that, over time, provide researchers with the information and thus the ability to track changes in an individual’s health, lifestyle and cognitive function. These changes could be important indicators of a person’s brain health and could help to best identify and recruit ideal candidates for medical research and future clinical trials.
Tens of millions of Americans suffer from brain ailments, and the number of participants in the BHR is growing every day. “The more people who join and agree to complete questionnaires and brain tests, the more valuable the information gathered will be and the greater impact researchers can have to ultimately accelerate the discovery of treatments for brain disease, such as Alzheimer’s, Parkinson’s, and many more,” Weiner said.
He said he hopes that by creating a vast database (at least 100,000) of pre-qualified potential participants, researchers “can make clinical trials for neurological diagnostics and treatments faster, better and more innovative.”
“We are building a large pool of potential participants in clinical trials. The brain tests and questionnaires can help identify those that might benefit from potential diagnostic tools or therapies,” he said. “This pre-screened applicant pool can take years off trials. When trials are faster, better and less expensive, investigators can test more theories and try new therapeutic approaches. The prospects for breakthrough innovation increase – and that’s exactly what we need.”
Other lead investigators on the BHR are Scott Mackin, Ph.D., associate professor in the Department of Psychiatry at UCSF, and Rachel L. Nosheny, Ph.D., assistant professor of psychiatry at UCSF.
The BHR partners with and is funded by the Alzheimer's Association, Alzheimer's Drug Discovery Foundation, California Department of Public Health, General Electric, Global Alzheimer's Platform Foundation and many more.
For more information about joining the BHR, click here.
The ADNI study is urgently looking for participants, Weiner said. This research study uses state-of-the-art imaging to monitor brain levels of two proteins—tau and amyloid—both of which have been proven to be significant indicators of Alzheimer’s disease. Researchers also track cognitive function through computer tests at home, and occasional exams and tests in a doctor’s office. No medication is involved. Participants must:
For more information on participating in the ADNI study, click here.
Weiner has authored 821 peer reviewed research papers and 62 book chapters. He holds 19 separate research grants and has received numerous honors including the Middleton Award for outstanding research in the Veterans Administration and the Nancy and Ronald Reagan Award for research from the Alzheimer’s Association.
Still, even he hesitates at predicting when a treatment and/or cure will be found for Alzheimer’s disease, “We can’t even predict the next election. How are we going to predict a cure for Alzheimer’s disease? Predicting things is very dangerous. There are some promising treatment trials going on, so a discovery could happen soon, but we just don’t know. People want to be hopeful, but this is not like building a sky scraper. Progress gets made, but it’s slow. If you want to do something to help the field, join Brain Health Registry or volunteer for a study.”