@article{5e32805f5e4d4015b472656586be2a59,
title = "2014 Report on the milestones for the us national plan to address Alzheimer's disease",
abstract = "With increasing numbers of people with Alzheimer's and other dementias across the globe, many countries have developed national plans to deal with the resulting challenges. In the United States, the National Alzheimer's Project Act, signed into law in 2011, required the creation of such a plan with annual updates thereafter. Pursuant to this, the US Department of Health and Human Services (HHS) released the National Plan to Address Alzheimer's Disease in 2012, including an ambitious research goal of preventing and effectively treating Alzheimer's disease by 2025. To guide investments, activities, and the measurement of progress toward achieving this 2025 goal, in its first annual plan update (2013) HHS also incorporated into the plan a set of short, medium and long-term milestones. HHS further committed to updating these milestones on an ongoing basis to account for progress and setbacks, and emerging opportunities and obstacles. To assist HHS as it updates these milestones, the Alzheimer's Association convened a National Plan Milestone Workgroup consisting of scientific experts representing all areas of Alzheimer's and dementia research. The workgroup evaluated each milestone and made recommendations to ensure that they collectively constitute an adequate work plan for reaching the goal of preventing and effectively treating Alzheimer's by 2025. This report presents these Workgroup recommendations.",
keywords = "Milestones, National, Plan to Address Alzheimer's Disease, Policy",
author = "Fargo, {Keith N.} and Paul Aisen and Marilyn Albert and Rhoda Au and Corrada, {Maria M.} and Steven Dekosky and David Drachman and Howard Fillit and Laura Gitlin and Magali Haas and Karl Herrup and Claudia Kawas and Khachaturian, {Ara S.} and Khachaturian, {Zaven S.} and William Klunk and David Knopman and Kukull, {Walter A.} and Bruce Lamb and Logsdon, {Rebecca G.} and Paul Maruff and Marsel Mesulam and William Mobley and Richard Mohs and David Morgan and Nixon, {Ralph A.} and Steven Paul and Ronald Petersen and Brenda Plassman and William Potter and Eric Reiman and Barry Reisberg and Mary Sano and Rachel Schindler and Schneider, {Lon S.} and Snyder, {Peter J.} and Sperling, {Reisa A.} and Kristine Yaffe and Bain, {Lisa J.} and Thies, {William H.} and Carrillo, {Maria C.}",
note = "Funding Information: Milestone AH calls for creating a centralized national IRB for neurodegenerative diseases (NIRB-ND), which would address unnecessary inefficiencies in both time and costs in launching multicenter studies, for which each study site is currently required to apply individually for IRB approval. Based on the model pioneered by the National Cancer Institute, an NIRB-ND would provide a very high level of expertise in neurodegenerative diseases, drawing multidisciplinary specialist panel members from across the United States and Canada. A small workgroup, with representation from private foundations, academia, and the Alzheimer's Association, has been working on a viable plan for the preceding two years, but thus far has received only limited financial support commitments (from the Alzheimer's Association and the National Research Council of Canada). Once established, the NIRB-ND will be financially self-sufficient. However, the effort to establish the NIRB-ND has slowed due to lack of financial support required from federal and industry sources needed to establish the administrative, software, computer networking, outreach and credentialing systems that will be required for an independent, nonprofit IRB. Recommended new milestone: • Convene a national symposium on the centralized IRB process, with representation from universities and other research institutions, government, industry, and philanthropic organizations, to 1) increase awareness and address potential concerns of research institutions, and 2) coordinate appropriate seed funding to launch the national IRB. 3.6 Publisher Copyright: {\textcopyright} 2014 The Alzheimer's Association.",
year = "2014",
month = oct,
day = "1",
doi = "10.1016/j.jalz.2014.08.103",
language = "English",
volume = "10",
pages = "S430--S452",
journal = "Alzheimer's and Dementia",
issn = "1552-5260",
number = "5",
}