It is timely to consider the development of a national registry on aging to provide a substrate for validating the clinical, imaging and chemical biomarkers that are forthcoming from the smaller types of studies discussed above. This type of registry could serve as a study of all cognitive aging: successful aging, typical aging, and impaired aging including MCI and dementia. A registry such as this could be distributed geographically to include all regions of the country, ethnic groups, urban and rural populations. By including all aspects of cognitive aging, successful, typical and impaired aging, there would be no stigma of an “Alzheimer’s Disease Registry.” Rather, cognitively healthy subjects could be studied to elicit factors that may lead to optimal cognitive functioning over the lifespan.
A national registry could establish a large cohort of subjects with certain baseline characteristics. At a minimum, basic demographic, cognitive assessments and perhaps biospecimens for DNA, plasma and serum could be obtained on all subjects. More in-depth evaluations could be conducted on subsets of participants depending on specific questions and protocols. Subjects could then be reevaluated longitudinally to characterize their status and change over time. An effort of this magnitude would likely be conducted using the Internet to capture and store clinical data.
A repository of this scope could serve several purposes. Initially, it could provide valuable cross-sectional data on aging as well as an opportunity to determine the frequency of various cognitive and biospecimen profiles. These individuals could be considered for large-scale intervention protocols on lifestyle modifications, clinical trials or assessments of the natural history of cognitive aging, imaging measures, and biomarkers. It may very well take an effort of this magnitude to validate many of the indices of plasma, serum, and neuroimaging. A subset of subjects may submit to cerebrospinal fluid analyses if the research center-based studies discussed above indicate that these measures might be useful on a broader population-wide basis.
A significant advantage of national registries would include the provision of well-characterized subjects who would be available for validating surrogates and evaluating therapeutic interventions. With appropriate safeguards for confidentiality, the data from this registry could be made available on the Internet. This strategy has been employed with the ADNI and has been remarkably successful. This would serve as a tremendous resource for individual investigators as well as the pharmaceutical industry planning to undertake therapeutic interventions. An effort of this magnitude would have to be initiated on a limited basis, but the systems and infrastructure could be designed to rapidly expand to encompass a true nation-wide sampling of the population. This type of registry would be useful for public policymakers, the National Institutes of Health, academic centers as well as industry for multiple investigations of national importance in an aging society. The value of an enterprise such as this would be limited only by the imaginations of potential users.
Issues concerning the oversight of such an effort would be challenging. It may ultimately reflect a cooperative agreement among federal, private, academic, foundations and other not-for-profit entities. It may take an organization such as the Alzheimer’s Association to broker this type of an effort. As a not-for-profit organization, they may be in position to oversee the administration of a project of this magnitude and may be able to use their chapter network to coordinate activities in various geographical locations. The Association may then solicit partnerships with the National Institute on Aging, the American Association of Retired Persons, the pharmaceutical industry, and various academic centers that may benefit from the establishment of this type of registry. The Alzheimer’s Association is not bound by “grant cycles” in the same fashion as government agencies and consequently might have the latitude for true longitudinal planning. An effort such as this would require unconventional planning and foresight.
The Second Leon Thal Symposium sponsored by the Lou Ruvo Brain Institute served as a forum for the discussion of new initiatives in aging and Alzheimer’s disease. The proposal for a national registry would be one step in the direction of developing predictors and, ultimately, prevention of cognitive impairment in aging. While the specific details of a proposal such as this would need to be considered very carefully, the potential benefit to society is likely well worth it.