ADNI Aims for Representative Subject Pool
Michael Weiner, MD, Professor in Residence in the Department of Radiology and Biomedical Imaging at UCSF, is the founder and Principal Investigator (PI) of The Alzheimer's Disease Neuroimaging Initiative (ADNI). Since its inception in 2004, ADNI is the largest multi-site longitudinal study on Alzheimer’s, mild cognitive impairment, and dementia funded by a consortium of public and private partners.
In a recent interview reflecting on ADNI’s significance in advancing Alzheimer’s research, Dr. Weiner observed that a major challenge for all clinical trials is that the trial participants do not fully represent the populations of people who need treatment. “ADNI is not representative. And this problem of representation is present across the entire medical research field. But we are always looking to do better. We need to engage and enroll people from underrepresented communities into research. That’s our mission now.”
There is an underlying problem in allowing such scientific trials to produce generalizable results out of non-representative participant pools. Dr. Weiner describes the problem thusly, “Treatments that are shown to be effective and relatively low risk in one population, might not be as effective and might have greater risk when you’re looking at underrepresented people.” ADNI participants are currently 80% white, and average four years of college across all groups which means almost half of the participants might have a graduate degree. However, the census reveals that in the general public, 45% of people over 65 have at most a high school education. In that same population, about 40% are Black, Latino, Asian, or members of other underrepresented groups. Dr. Weiner has observed that inadequate representation is a problem that can be seen in all the Alzheimer’s clinical trials going on today.
Michael Weiner, MD, speaking about ADNI
To recruit a more broadly representative participant pool in the fourth round of funding, ADNI is partnering with digital advertisers and hiring recruiters to enroll study participants from populations that have been underrepresented in the past. Dr. Weiner and ADNI leadership have set a goal that 50% of new members in the next study phase will come from underrepresented groups. New leaders for ADNI’s fourth phase include Monica Rivera Mindt, MD, Fordham University, and Ozioma Okonkwo, PhD, University of Wisconsin.
About ADNI: ADNI researchers collect data including MRI and PET images, genetics, cognitive tests, cerebrospinal fluid and blood biomarkers as predictors of the disease. Today, ADNI data is used by the top companies conducting clinical trials to develop treatments and preventative measures targeting Alzheimer’s disease. This unique long term sample pool, which includes years following healthy patients, offers invaluable data of people first developing symptoms of mild cognitive impairment. This allows researchers to look for predictive biomarkers instead of only being able to start the examination post-diagnosis.
To learn more about ADNI, visit https://adni.loni.usc.edu
If you are between 55 and 90 years of age and would like to learn more about participating in the study, please visit https://www.adni3.org/eligibility-screener