| | Alzheimer's Association Update for July 2009Public Policy Forum draws record attendance  The Alzheimer's Association's 2009 Public Policy Forum, held March 23–25, saw record attendance by Alzheimer's disease (AD) advocates, who traveled from 49 states, the District of Columbia, and Canada to Washington, D.C., for the event. Advocates including the highest-ever number of individuals with AD to participate in the Forum, made 462 visits to Congressional offices. Advocates asked their legislators to support increasing fiscal year 2010 AD research funding at the National Institutes of Health by $250 million, with a goal of reaching $1 billion per year in funding in fiscal year 2011; establishing an outcomes-oriented federal Alzheimer's Solutions Project office that would lead national efforts in AD; and phasing out Medicare's two-year waiting period so individuals with AD who are eligible for Medicare receive benefits immediately after determination of disability. One hundred fifty-five members of Congress said they would support the $250 million increase for AD research funding; 67 indicated their support for the creation of an Alzheimer's Solutions Project office; 158 said they would sponsor legislation phasing out the two-year waiting period for Medicare benefits for individuals with AD; and 54 said they would support all three requests. Advocates are following up with legislators to ensure these commitments are kept and encouraging other legislators to commit to these requests. Educational highlights Forum chair and Association National Board member Tamara Lucero, MD, kicked off the forum, which included a candlelight vigil at the Lincoln Memorial in honor of those affected by AD. During the opening session, attendees heard from nationally renowned political analyst and journalist Charlie Cook on the political landscape in Washington and from Board member Marilyn Albert, PhD, about the latest in AD research. Introducing attendees to the HBO documentary series “The Alzheimer's Project,” which aired May 10–12, journalist, AD advocate, and first lady of California Maria Shriver shared with attendees how she has been personally affected by AD. Shriver, one of the executive producers of the series, is the daughter of politician and diplomat Sargent Shriver, the first director of the Peace Corps, and Eunice Kennedy Shriver, sister of John F. and Robert Kennedy. Mr. Shriver, age 93, has AD. Alzheimer's Association and Alzheimer's Study Group reports This year's Forum saw a wealth of information being released, beginning with the Alzheimer Association's 2009 Alzheimer's Disease Facts and Figures report (Alzheimer's Association. 2009 Alzheimer's disease facts and figures. Alzheimers Dement 2009;5:234–70; available online at http://www.alzheimersanddementia.org), which highlighted the fact that AD triples healthcare costs for Americans age 65 and older. Additionally, The Alzheimer's Study Group (ASG), a blue ribbon panel of national leaders, released its report, A National Alzheimer's Strategic Plan, that outlined a plan for government to confront the challenges of the AD crisis. At a hearing before the Senate Special Committee on Aging, committee members heard from ASG co-chairs former House Speaker Newt Gingrich and former Nebraska Senator Bob Kerrey, ASG member former Supreme Court Justice Sandra Day O'Connor, and Maria Shriver about the ASG's recommendations. The hearing was standing room only, with Forum attendees joined by more than 200 advocates from neighboring states. The 2009 Facts and Figures report and the ASG report dominated national media coverage, with stories on ABC's World News Tonight and Nightline, NBC's Nightly News, C-SPAN's Washington Journal, CNN's Headline News, and NPR's “Talk of the Nation.” Newspapers including USA Today and the Boston Globe and Dallas Morning News featured stories on Facts and Figures, as did the Associated Press, Bloomberg, and Reuters. For photos from this year's Forum visit http://www.alz.org/publicpolicyforum/09/photogallery.asp Research Roundtable scientists reconsider the criteria for AD diagnosis  More than 100 researchers from academia, the pharmaceutical industry, the National Institutes of Health, and regulatory agencies gathered April 1–2 in Washington, D.C., at the Association's Research Roundtable to discuss new data and technologies that may improve the diagnosis of AD, especially in its earliest and mildest stages. In a gathering that meeting co-chair Steven DeKosky, MD, of the University of Virginia described as bringing together the “dream team” of those in the field of AD research, scientists discussed the current criteria for AD diagnosis, which are nearly 25 years old, and whether the time had come to establish new criteria that take into account advances in AD research. Leading the sessions held on day one of the meeting, Richard Mohs, PhD, of Eli Lilly & Company noted that the current criteria had served the field well, but that much has been learned since 1984 about the neuropathology and epidemiology of AD, as well as about biomarkers that might signal the presence of the disease in its earliest stages, when clinical symptoms have not yet developed. The question posed at the meeting, he explained, was whether these data are sufficient to warrant revision of the criteria for establishing a diagnosis of AD. AD classification The meeting brought the question into focus with discussions of the current status of AD classification, improvements in cognitive and performance-based assessments, clinical presentation and risk assessment, structural and functional imaging assessments, and molecular imaging markers of AD. David Knopman, MD, of the Mayo Clinic observed that the current criteria are reasonably reliable and specific but do not detect AD in its mildest forms and that if new criteria were developed, they should detect AD across the continuum of the disease, from its earliest to its latest stages. In a statement echoed throughout the meeting, Dr. Knopman said that new criteria would need to work for all stakeholders in the field, including clinicians, researchers, the public, and regulatory agencies. Released in a 2007 position paper in Lancet Neurology, a set of proposed criteria commonly referred to as the Dubois Criteria might form the framework for new diagnostic criteria, recognized attendees. The criteria incorporate biomarkers and require a change in episodic memory. Unlike the current criteria, the proposed criteria do not require functional impairment, such as difficulty in carrying out daily activities, social activities, or work responsibilities. In a presentation on the continuum of cognition and neurobiology, Howard Feldman, MD, of the University of British Columbia in Vancouver, Canada, asked his colleagues if functional disability need be a core criteria for diagnosis or whether it was more important to recognize other criteria that could identify AD early and be used in research to develop drugs that might eventually prevent AD. Many attendees weighed in on the broader discussion of whether intervention after the development of functional disability would be too late to make a difference in outcome. Assessment tools Because cognitive evaluation as currently carried out is subjective and open to human error, automated testing might add a measure of objectivity that could aid in early diagnosis. For such tools to be accepted and used in clinical practice, they need to be reliable, user-friendly, self-administered, and, preferably, reimbursed by insurance companies, explained Judy Saxton, PhD, of the University of Pittsburgh. According to a study conducted by Dr Saxton, primary care physicians, who make most diagnoses of AD, often don't feel comfortable administering cognitive assessments and don't have confidence in evaluating their results, which contributes to delays in AD diagnosis. Neuropsychiatric assessment should continue to have a role in diagnosis if new criteria are established, said Constantine Lyketsos, MD, of Johns Hopkins University, who described an expanded version of the Neuropsychiatric Inventory (NPI) called the NPI-C that is undergoing validation studies at 12 international sites. The NPI, which is currently used for diagnosis, works well to diagnosis mild to moderate AD but not earlier stages of AD. It takes into account the observations of an informant only, not those of the individual affected by AD, and doesn't include assessments of global neuropsychiatric function or measures of very specific aspects of function such as agitation. In contrast, the NPI-C has been developed to take these factors into account and to incorporate the observations of individuals with AD, which is of particular benefit in the early stages of the disease. Leading AD researchers Mony de Leon, MD, of New York University, William Jagust, MD, of the University of California, Berkeley, and Philip Scheltens, MD, PhD, of Vrije Universiteit Medical Center in the Netherlands explained the potential and limitations of a variety of assessments of brain structure and function in AD as determined through magnetic resonance imaging and positron emission tomography (PET). These include PET with Pittsburgh compound B (PET-PIB), which is used to identify beta-amyloid in the brain, and PET with fluorodeoxyglucose (FDG-PET), which is used to assess glucose metabolism in the brain. Data from molecular imaging studies under way around the globe hold great potential for informing the development of potential new criteria for diagnosing AD. Data from many of these studies will be delivered this year, including data from the Alzheimer's Disease Neuroimaging Initiative, involving 800 subjects; the Australian Imaging Biomarkers and Lifestyle Study, involving 1,000 subjects; and the AddNeuroMed study, involving nearly 700 subjects. The National Institute on Aging and the Alzheimer's Association will continue discussions as to whether current evidence warrants revision of the criteria. PII: S1552-5260(09)02027-5 doi:10.1016/j.jalz.2009.05.668 | 
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