A growing databank, with details about attention, memory and visual perceptions as well as the blood and DNA of Alzheimer’s disease patients, is helping unravel the mysteries of the degenerative brain disease, its organizers say.
“A lot of people are really interested in helping us find out what causes this disease,” Dr. Jerry J. Buccafusco, director of the Alzheimer’s Research Center at the Medical College of Georgia, said of the Neurological Diseases Databank Repository.
Studies already making use of the data include one examining the autoimmune aspects of the devastating disease and another looking at whether routine tests that are part of a yearly physical provide early clues that Alzheimer’s is in the patient’s future.
MCG is enrolling patients with Alzheimer’s disease in the databank that also will eventually pave the way for patients to access clinical trials evaluating the latest treatments, Dr. Buccafusco said.
Enrollees get a comprehensive two-hour neuropsychological examination that yields the type of data critical to Alzheimer’s studies, such as how and when symptoms began and a detailed medical history, including other diseases and medications taken. “We are bringing patients in, characterizing their disease and correlating that with markers in their blood and DNA,” Dr. Buccafusco said. “We are getting the type of information we perceive may be important to have now and in the future.”
“We do two interviews concerning their daily living activities and their behaviors,” said Rose Schade, study coordinator. “We ask questions such as whether the patient can bathe by themselves, dress themselves, feed themselves. We get into activities of self-control: Do they feel irritated or agitated? Do they have trouble with restlessness or overactivity?” Mrs. Schade said.
Depending on the patient’s status, his caregiver may respond to many of the questions. Often those caregivers – frequently a family member – enroll as well, providing the type of control data that may be needed for comparative studies.
Examinations are given at the MCG Senior Health Center and patients are re-examined every six months to provide longitudinal data. Dr. Buccafusco said the MCG faculty and staff at the senior center, particularly Dr. Tom Jackson, geriatrician, have been invaluable in building the databank.
The patients and their caregivers have been invaluable as well, he said. Test information is confidential and not released by name even to the patients. “It’s strictly for research and the patients are doing this for altruistic reasons,” Dr. Buccafusco said. “Our work may end up helping them down the road, depending on what we find.”
Just being a part of the repository may help as well because it one day will also help identify patients with certain characteristics who might benefit from a new therapy under study. In those cases, after the study has been approved by MCG’s Human Assurance Committee, patients can be contacted and asked about their interest, Dr. Buccafusco said.
Faculty from the MCG Departments of Neurology and Psychiatry and Health Behavior will soon begin an Alzheimer’s clinic; one of the many clinic goals is to make innovative treatments under study available to patients, said Dr. David Hess, neurology chairman.
MCG also has an Alzheimer’s DNA Bank, directed by neuroscientist Dr. Shirley E. Poduslo, whose studies include pursuit of the genes responsible for late-onset Alzheimer’s. Dr. Poduslo has a particular interest in enrolling patients and their families in her databank.