by Jill Thompson
The National Alzheimer's Coordinating Center (NACC), after nationwide competition, was awarded to the University of Washington by the National Institute of Aging in July 1999. NACC's mission is to promote and support collaborative research between investigators at the 30 Alzheimer's Disease Research Centers (ADCs) across the United States. This five-year project aims to improve the quality of Alzheimer's disease research through rigorous research design, data sharing and standardization.
The NACC is headed by Dr. Walter Kukull, professor of epidemiology at the University of Washington. He has 20 years of experience directing several large studies of Alzheimer's disease. Joining him as co-director is Dr. Gerald van Belle, professor of biostatistics and former chair of the Department of Environmental Health. NACC works closely with the Alzheimer's Disease Centers with the assistance of a Steering Committee, which is comprised of directors and investigators from eight of the ADCs.
The first ADCs opened in 1984. Since then, over 40,000 people have been evaluated at the 30 funded centers. Though each of these centers has a similar mission, they often do their research in different ways to meet the needs of their community and the interests of the investigators at that institution. Collaborative efforts across several of these centers may speed valid research results.
NACC includes both data management and statistical consultation to accomplish its scientific goals. The data management component is comprised of these principal sections.
1. Minimum Data Set.
The NACC has collected a minimum amount of data on each research participant at each of the Alzheimer's Disease Centers. This data is available on the NACC website for initial viewing by authorized ADC investigators only. Investigators access this data to find out which centers have research subjects that are similar (for example: are of Hispanic descent or had an autopsy that showed the presence of Lewy bodies in the brain tissue). Some of the data in the Minimum Data Set will be summarized in reports available to the public via the NACC Web site in the near future.
2. Specimen Catalogue.
NACC is currently working to develop a catalogue of brain tissue, blood samples, and DNA that are available for sharing between Centers. This is a large job that requires the centers to provide information about the quantity and type of samples that they collect, information about the patients who donate the samples, and the procedures used to process the samples. In addition, it requires that inventories of samples be kept current. This catalogue will be essential for collaborative projects of unusual neuropathologic findings.
3. Site Database.
Because each ADC collects data using its own procedures, not all data can be combined for collaborative research. NACC is working to describe how each center found their research participants, what tests they used in their evaluation, and how the diagnoses were made. As this information is gathered, it will be placed on the Web site for the use of the investigators who are developing collaborative relationships. Researchers with similar procedures will be able to collaborate much more easily.
Statistical consultation and rigorous study design are fostered by the following initiatives.
1. Research Consultation.
Dr. Kukull and Dr. van Belle head a team of University of Washington professors who serve as research consultants to the ADCs for their collaborative projects (Drs. Wil Longstreth, Harvey Checkoway, Thomas Lumley, Ron di Giacomo, Stephanie Monks, and Roger Higdon). They provide the perspective on methods in collaborative projects. Higdon and systems manager Duane Beekly assist with the development of databases for storing data collected under these collaborative efforts. These research databases will eventually be made available to the entire center community. Finally, NACC faculty help review and assist with the analysis and publication of the results of the collaborative efforts.
2. Collaborative Project Funding.
NACC provides approximately $800,000 per year in funding for collaborative projects. In the first year, three projects were funded.
"Collaborative Study Group on Vascular Pathology," led by Dr. Neil Kowall from Boston University, will be standardizing the way investigators evaluate how the vascular system influences Alzheimer's disease, leading to more accurate diagnosis and treatment.
"Identification of Atypical Dementias from Neuropathology to Molecular Etiology," led by Dr. Bernadino Ghetti from Indiana University, utilizes a number of genetic and neuropathology methods to study the similarities and differences of brain tissue from Alzheimer's subjects who had atypical findings at autopsy.
Dr. Michael Grundman from University of California, San Diego will be leading a project entitled, "A Multi-Center Collaboration to Evaluate Candidate Agents for AD Prevention Trials." This project looks at patients who have very mild symptoms of memory loss to see if use of vitamins, anti-inflammatory drugs, or other drugs can prevent progression to full-blown Alzheimer's disease. These three projects involve subjects and investigators from 19 of the ADCs.
Currently, 12 collaborative research proposals are under review for funding in November 2000. It is anticipated that three or four of these projects will be funded by NACC.
3. Increased Communication.
NACC is involved with several activities to increase communication among the investigators and staff at the centers. It sponsors biannual meetings of the ADC directors, and annual meetings of the ADC clinicians, neuropathologists, data managers, and administrators. At these meetings, the investigators get a chance to meet face-to-face to discuss common research interests. These meetings also bring in scientists to provide information on the latest findings in Alzheimer's research.
The NACC website, www.alz.washington.edu, includes access to the Minimum Data Set, links and directory to the Centers, and information about the collaborative projects. A directory of the center staff is published and distributed annually. NACC News is a quarterly newsletter that highlights the activities of the NACC and the centers.
By building collaborative relationships and promoting quality research, the NACC will become a driving force for the next wave of Alzheimer's research.