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Comment by: Robin Pierce
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Submitted 23 February 2011
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Posted 23 February 2011
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I watched the documentary with great interest this weekend. On one hand, the stories told by and about the families of AD patients were extremely compelling and provided valuable insight into the experience of the disease and the prospect of research participation by at-risk family members, the latter being an under-studied facet of dementia research, in my view.
It was also noteworthy that the documentary did address (albeit briefly) the issue of benefits to research participants (in Colombia) at the end of the trial, e.g., access, participation in other trials, etc. This is an often overlooked aspect of trials conducted in other countries.
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Related News: Phoenix: Trials in Colombia and the U.S. for Those at Highest Risk?
Comment by: Kenneth Kosik, ARF Advisor
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Submitted 1 March 2010
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Posted 1 March 2010
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The API project is important and valid, but I'd like to point out one oversight in this story. While the two study populations targeted at present are primarily selected on the basis of genetic risk, the non-genetic risk factors for AD, such as cardiovascular conditions and lifestyle risks, are significant. How intervening in these non-genetic risks will measure up against a drug treatment is unknown. In other words, treating an ApoE4/4 individual who also exercises and eats a Mediterranean diet may have a very different outcome compared to one who does not. Perhaps another benefit of the families in Antioquia is the relative uniformity of their lifestyle risks. Their diets and exercise levels are quite similar throughout the population.
View all comments by Kenneth Kosik
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Related News: DIAN Dispatch from Hawaii: Glimpse at Data, Push for Trials
Comment by: Vincent Marchesi, ARF Advisor
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Submitted 20 July 2010
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Posted 23 July 2010
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One can only applaud the courage and commitment of the investigators involved in this study. It is surely a wise move to follow people with dominant mutations who are clearly at risk for clinical AD, and the markers to be studied are probably the best available.
But I'd still like to ask two questions: How sure are we that the accumulation of amyloid seen by scanning and the CSF levels of Aβ and tau that are being measured do indeed reflect the earliest pathogenic mechanisms that lead to symptomatic AD?
Secondly, is this the best time to couple this study with a battery of untested experimental therapies? No one is more aware than I of the desperate need for effective treatments, and the pressure on the investigators to add them to the study must surely be suffocating. My concerns are these: Although the evidence linking amyloid Aβ to AD is overwhelming, we still don’t know how or when it becomes toxic, and, equally important, whether other factors, such as inflammation, oxidative damage, and vascular injury are just as critical to the development of clinical disease....
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One can only applaud the courage and commitment of the investigators involved in this study. It is surely a wise move to follow people with dominant mutations who are clearly at risk for clinical AD, and the markers to be studied are probably the best available.
But I'd still like to ask two questions: How sure are we that the accumulation of amyloid seen by scanning and the CSF levels of Aβ and tau that are being measured do indeed reflect the earliest pathogenic mechanisms that lead to symptomatic AD?
Secondly, is this the best time to couple this study with a battery of untested experimental therapies? No one is more aware than I of the desperate need for effective treatments, and the pressure on the investigators to add them to the study must surely be suffocating. My concerns are these: Although the evidence linking amyloid Aβ to AD is overwhelming, we still don’t know how or when it becomes toxic, and, equally important, whether other factors, such as inflammation, oxidative damage, and vascular injury are just as critical to the development of clinical disease. Does this overwhelming focus on amyloid as the primary culprit divert attention and resources away from the study of these other factors? If we continue to ignore them, the best designed therapies for the control of amyloid may be rendered ineffective.
View all comments by Vincent Marchesi
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Related News: Mark Your Calendars: Powerful CNN Documentary on Alzheimer’s
Comment by: John Keitzer
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Submitted 28 January 2011
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Posted 28 January 2011
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As a caregiver for seven years and counting to my wife of 64 years, I find this encouraging. I am currently trying to get her into a trial.
Thank God for the new research.
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Related News: Mark Your Calendars: Powerful CNN Documentary on Alzheimer’s
Comment by: Terrence Town
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Submitted 27 January 2011
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Posted 28 January 2011
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I look forward to watching what promises to be an interesting and thought-provoking documentary. I am fairly certain that I echo the thoughts of the AD research community in stating the incredible importance of raising public awareness to this tragic disease.
I don't think it is hyperbole to state that AD is the public health crisis of our time. Unfortunately, right at the time when we should be focusing our efforts on AD prevention and treatment, we face NIH budget shortfalls that have a choke hold on our research efforts.
I truly hope that documentaries such as this raise awareness of the scope and breadth of this problem, and prompt a re-evaluation of research priorities from public health leadership.
View all comments by Terrence Town
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