DIMENSIONS Winter 1998


by Michael Matulka

When you are participating in an Alzheimer's disease (AD) research project, you may be questioned, given a physical exam and asked to perform some task. Each question, each exam and performance becomes research data. After you complete your interviewing you leave, but the data remains. Now let's say the research project you're a part of has thousands of people. What happens to all of that information? As a senior computer specialist for the Department of Environmental Health at the University of Washington, Duane Beekly tries to answer that question every day.

Navigating the flow of information from numerous AD research projects has not been what you might consider a direct route for Beekly He began with a B.S. in oceanography from the UW in 1974. This led to a computer job with the U.S. Department of Agriculture in Washington, D.C. for a couple of years, which in turn led to work in Alaska for eight years with the Department of the Interior. Beekly originally brought his computer experience from Alaska to Seattle to work on the Consortium to Establish a Registry for Alzheimer's Disease (CERAD) research project at the UW, which lasted for 10 years. Beekly is currently working on numerous AD research projects with Steve Edland and Dr. Gerald van Belle.

Comparing his current work with his past experience, Beekly says it is "completely different from what I was doing, but I learned." This willingness to learn has helped Beekly act as data manager for a variety of research projects, including the: Alzheimer's Disease Patient Registry (ADPR); KAME; Genetic Differences, and the Alzheimer's Disease Research Center (ADRC). Each project involves thousands of people and requires hundreds of forms. To help keep the data organized, Beekly consults with project directors and sets up the computer networks and databases needed to access the information.

Each research study has its own particular data needs. Physicians use information from physical exams, while epidemiologists require statistical incidence reports. Beekly plays a crucial role by keeping the data organized so that each researcher in the study has the information he or she needs. Beekly sees his role as a data manager as "critical"in helping scientists access the data they need for interpreting results, which may ultimately help those suffering the effects of AD.

Tracking of thousands of pieces of information, scheduling interviews, and verifying the accuracy and quality of the data are just a few aspects to the enormous task of managing information. Another important part of Beekly's job is to provide data security. Many people who participate in AD research are concerned about the possibility of their names being published, or that unauthorized people will have access to their data. In response to this concern, Beekly says that all of the names used throughout the research are coded into the database by number. Thus, participants in a study can be assured that the level of confidentiality and security necessary to protect their identities is maintained.

Family life is also important to Beekly, who now works on a part-time basis to be at home with his children. Balancing his professional work with family life has given Beekly satisfaction in knowing that he has made a positive contribution in the lives of his family and those with AD.

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