MISSION:   Create an accessible collection of extant databases on dementia-related research, clinical practices, and patient characteristics.

Work Plan:

The work plan has two emphases:

1) the development of a compendium of publicly available databases pertaining to the clinical, public health, and epidemiological aspects of Alzheimer’s disease. This catalogue, posted on the World Wide Web, would serve as a resource for local and national researchers.  Data base descriptors (e.g., survey description, data file description, list of data file variables at a glance, format characteristics, geographic coverage, ordering and contact information, related reports) and links to the appropriate websites would be provided, and

2)   the development of a central, consolidated database in Virginia that would provide an opportunity to study subgroups of patients from multiple clinics within the Commonwealth.

The construction and the availability of a Virginia State clinical/demographic database could become an extremely valuable resource not only to public policy formulators (e.g., to address such issues as services utilization, health economics, resources allocation for research and other similar policy issues) but also to researchers involved in epidemiology, demography, or clinical trials.  A properly designed database could potentially generate revenues, which in return could support other initiatives or programs of the Virtual Center.      

Chair:

• Constance Coogle, Ph.D. (Virginia Center on Aging, Virginia Commonwealth University Medical Center) - Chair

Progress Report:

Compendium of publicly available databases

The core has begun to identify the sources of secondary databases available from various federal government agencies, including the Center for Medicare and Medicaid Services, the Centers for Disease Control (Center for Health Statistics), and the National Technical Information Service.  In addition, data from federally sponsored surveys (e.g., National Health Interview Survey, Healthcare Cost and Utilization Project, National Long Term Care Survey, National Nursing Home Survey, National Vital Statistics Systems) are currently being investigated.   

With respect to state level data, the core is pursuing the possibility of adding questions to the Behavioral Risk Factor Surveillance Survey, a telephone survey designed to collect information regarding the prevalence of self-reported health problems and health risk behaviors, which has been conducted in Virginia on a monthly basis since 1989. Established by the National Center for Chronic Disease Prevention and Health Promotion (CDC) with a national core of standardized questions supplemented by questions added from each of the states, the survey in Virginia is currently being conducted by the Survey and Evaluation Research Laboratory at Virginia Commonwealth University under contract with the Virginia Department of Health, Office of Family Health Services.  Approximately 3,500 Virginians are being selected annually to participate in Virginia’s survey.

A central, consolidated database in Virginia

The core has obtained the Minimum Data Set Form and the Neuropathology Data Form from the National Alzheimer’s Coordinating Center.    It provides an example of the types of information that the virtual center might consider including in the Virginia State database.

The core has conversed extensively with individuals affiliated with the California Alzheimer’s Disease Program.  Funded since 1985 with state level appropriations to the California Department of Health Services within the California Health and Human Services Agency, the program has established 10 Alzheimer’s Disease Research Centers of California (ARCCs) throughout the State.  The ARCCs perform standardized assessments and data collection on over 1,000 patients each year.  As part of the program evaluation for the Centers, the Institute for Health and Aging at the University of California, San Francisco maintains the Minimum Uniform Data Set (MUDS).  The MUDS provides demographic, medical, service utilization, and programmatic information on every patient seen at the ARCCs.  The MUDS and ARCCs network provides the opportunity and means for a variety of collaborative research projects annually.  The MUDS currently contains data from over 13,000 new patient evaluations and over 21,000 patient reassessments.  To date, the MUDS have generated over 300 publications and presentations.

Recognizing the California Program as an ideal model, the core has obtained detailed information on the variables included in the MUDS.  The core knows precisely what data were collected when the MUDS was first established and the changes that have taken place through the years The group also has obtained copies of the enabling legislation that founded the California Alzheimer’s Disease Program, as well as all subsequent legislation.  Its 1999 Request for Applications could serve as a model, should Virginia pursue the establishment of a Common Database.  The group has a collection of reports that describe the value of the ARCCs and how these State Centers have impacted the delivery of health care in California.   

The group has also begun to gather information related to the databases that are established at the memory disorders clinics in Virginia identified by Core members.  The UVA Department of Neurology is in the process of developing a database in conjunction with their Alzheimer’s Disease Research Center (P50) grant.  The Memory Assessment Clinic at the Glennan Center for Geriatrics and Gerontology, Eastern Virginia Medical School (EVMS) has a database developed by collaborating neuropsychologists to determine clinical and psychometric measures for small research projects. Further, the core talked with a representative from the Geriatric Assessment Clinic within the Carilion Center for Healthy Aging in Roanoke.  The clinic collects baseline and two-month follow up data on 400-450 outpatients (community dwelling elders) annually.

The core has only begun to identify the sources of secondary databases available from various federal government agencies.  It is anticipated that there will be a paucity of morbidity data available, and extensive effort will be needed to pursue the investigation. State-level sources for databases need to be investigated.  The Virginia Department for the Aging, as well as the Departments of Social Services and of Medical Assistance Services will be contacted about the availability of publicly accessible databases.  The Virginia Ambulatory Care Outcome Research Network in the research division of the Department of Family Practice at Virginia Commonwealth University may also be a source for a longitudinal dataset on the health status of primary care patients and on the effectiveness and quality of care they receive.

The capacity of the virtual center to develop a database that approximates a representative sample for epidemiological research depends on the comprehensiveness of the identification and recruitment effort. 

An issue identified by core members early on was related to variability in the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes assigned to patients with Alzheimer’s disease.  This may systematically vary with different regions of the State and it would be instructive to make this determination.

Much more needs to be learned about how compliance with HIPAA and the final Privacy Rule will influence the use and disclosure of personally identifiable health information for research purposes.  The core’s contacts affiliated with the California Alzheimer’s Disease Program and at Virginia Commonwealth University, Office of Research Subjects Protection, may prove helpful.

TOP