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A physician discusses scans with a clientThe Alzheimer's Disease Care, Research and Education Program (AD-CARE) has conducted, directed, or consulted to clinical trials for Alzheimer's Disease and other dementias since 1986, including several landmark trials. We have been involved in over 150 clinical trials involving large numbers of people from the Finger Lakes region and the surrounding area.

In the past, the AD-CARE Program has played a role in numerous trials that helped support the approval of all the medications currently used for Alzheimer's disease treatment (donepezil, galantamine, rivastigmine and memantine). It has also been a leading enroller in several pivotal phase 3 trials, including studies with the compounds dimebon and R-flurbiprofen, and has participated in several trials with immunotherapeutic agents (i.e., IGIV and bapineuzumab) that aim to slow the progression of Alzheimer's disease. Some recent trials offered through the AD-CARE Program have investigated medications previously approved for other indications that might also have a beneficial effect in the treatment or prevention of Alzheimer's disease, including simvastatin, DHA, and depakote. The AD-CARE Program has also had a pivotal role in a variety of studies that investigate non-cognitive symptoms of dementia, such as DIADS-2 for depression and CIT-AD for agitation. In addition to treatment studies, the AD-CARE Program focuses on improving the scales, imaging and diagnostic techniques that are used in the care of patients with Alzheimer's disease through studies like the Alzheimer Disease Neuroimaging Initiative.

Rochester Is Nation's Leading Alzheimer's Study Site

Author: Tom Rickey, University of Rochester Department of Public Relations

A study coordinator visits with a patient(March 2, 2006) - More people have taken part in Alzheimer’s studies at the University of Rochester Medical Center than at any other site in the nation, according to figures from the Alzheimer’s Disease Cooperative Study group, the premier collection of scientists nationwide who work together to test new treatments for the disease.

During the last five years, 130 people in the Rochester area took part in the group’s studies, a number nearly double the next-highest institution’s total of 68. Rochester’s numbers are even more significant when the size of the metropolitan area is compared to other cities like New York and Los Angeles, which also have study sites. ADCS includes 66 sites around the country.

“The altruism that people in Rochester show by taking of their time to do what they can to fight Alzheimer’s is remarkable and touching,” said Anton Porsteinsson, M.D., who leads the Rochester site. “Their efforts now will pay off perhaps for themselves, but more likely their children and grandchildren, as we continue to discover new ways to treat and hopefully prevent the disease.”

In the past 20 years, physicians at the University of Rochester Medical Center and their patients have taken part in virtually every large study of a potential Alzheimer’s medication. Their work has spanned a time when there were no medications approved to treat the disease, to today when an array of drugs is available to help fight symptoms such as memory loss, thanks in part to people who volunteered for early studies of the medications.

Among recent findings from such studies, University doctors have shown that a common seizure medication holds promise in the treatment of dementia, and they are playing a major role in a large study to test whether anti-inflammatory medications help prevent the disease.

Currently doctors and patients at the University’s Program in Neurobehavioral Therapeutics and its Memory Disorders Clinic are taking part in 14 studies. Efforts include a $60 million study to test whether new imaging techniques and other technology can be better used to assess and treat patients with memory loss and dementia, and tests of new compounds designed to better treat the disease, slow the cognitive decline it causes, or even prevent the disease outright.

A Brief History of Alois Alzheimer and His First Patient

Many today take it for granted that we have detailed information about Alois Alzheimer's first patient, Auguste D. In fact, her medical records were only recently found, in 1995, by a team of curious doctors. The last time the records were seen was in Germany in 1909, before two world wars ripped the country apart. Due to these circumstances, most assumed that any records of the first patients diagnosed with Alzheimer's disease were destroyed. This did not discourage doctors from the U.S., Japan and Germany from searching for any evidence of these cases discovered by Alzheimer in the first decade of the 20th century. As fate would have it, just days after the eighty year anniversary of Alzheimer's death, the files were found fully intact in a basement at the University of Munich. In the file they found the original notes of Alois Alzheimer, the brain tissue taken during the autopsy, along with a well-preserved picture of Auguste D.

Auguste D was 51 in 1906 when she was admitted to the Frankfurt Asylum. She was put under the care of Alois Alzheimer, a German doctor who specialized in biological psychiatry. He began taking detailed notes about her curious illness that caused her to forget her name, her husband's name, the name of common objects and transformed her personality. While her clusters of symptoms were unusual, Alzheimer realized he was seeing something completely new when he performed an autopsy after her death in 1906. He found deposits around her brain cells, as well as twisted fiber bands within the cells.

Before finding Auguste D.'s brain tissue in 1995, many people debated whether the case first described by Alzheimer could be classified as Alzheimer's by today's standards. With the discovery of the brain tissue, scientist have learned that Auguste D. truly had Alzheimer's disease, as her brain did show signs of plaques (the deposits) and tangles (the twisted fibers), the hallmarks of final diagnosis of AD at autopsy.

The findings were a vindication for naming the disease after the German doctor.