Report of the Alzheimer’s Disease Centers External Advisory Meeting
In preparation for issuing the next RFA for Alzheimer's Disease Centers, the NIA initiated a planning process, seeking input from scientists both inside and outside of the existing Centers. A diversity of opinions emerged during the planning process from individuals working in the Centers and from position statements prepared by some of the Centers. Many issues relating to how Centers presently function and suggestions for changes that would improve operations were discussed in a meeting held in May 2001 and attended by all current Center Directors and by NIA staff. The process culminated in a second smaller advisory meeting at NIH where the opinion of outside experts was sought. The outside experts did not have primary affiliations with any of the Centers and the meeting served the function of a concept clearance. Briefing books providing summaries of the Centers input, descriptions of research in existing Centers, as well as background material about the program as it is presently structured were distributed to the external advisory committee for the meeting held on May 6, 2002.
Discussion at the external advisory committee meeting revolved around what has worked well and what has not and whether the configuration of the Centers Program during the first 20 years of its existence is the best configuration for the next period. While the committee concluded that the Alzheimer’s Centers program has been very successful, members suggested that, to maintain the momentum and enter a new era of AD research, some constructive changes could be implemented to better serve the research agenda.
While many issues were discussed, the following were the main recommendations:
The first recommendation was to permit greater flexibility in structure of the individual Centers in order to take better advantage of local strengths and to tailor the Center's organization to emphasize local interests and expertise. For example, it was suggested that centers might enroll and follow special patient populations rather than using only clinic populations as has been required up to now. Another option may be to permit the Center to focus on “required functions” rather than fit into a required common structure. For example while all Centers should be able to provide autopsy confirmation for subjects enrolled, it may not be necessary for all Centers to have a Neuropathology core. They might, instead, contract with another Center to provide for the neuropathological evaluation of post mortem tissue. Likewise, other services, such as educational programming, could be contracted to outside organizations such as the Alzheimer's Association.
A second recommendation was to continue and accelerate standardized clinical data collection across Centers. To promote better collaborative clinical studies, it is necessary to have a much larger clinical data set on each Center subject collected under standardized protocols used by all Centers. While each Center will be encouraged to continue collecting the data needed for local research interests, additional standardized neuropsychological and neurological data will be collected by all Centers and transmitted to the National Alzheimer’s Coordinating Center (NACC) where data from all centers will be pooled for studies requiring large sample sizes. A working group should be charged to draw up the standard protocols.
A third recommendation was to promote better use and increased sharing of tissue and data resources among the Centers and the general scientific community. One example of this is the further development and expansion of the National Alzheimer's Cell Repository located at Indiana University to increase its capacity to bank cell lines, DNA, and serum from all Centers as well as other sources. These biomaterials will be available for sharing with geneticists at other Centers and the scientific community at large. Another example would be the increased use of the frozen or fixed post mortem brain tissue collected and stored at all Centers for collaborative studies such as microarray studies. This will encourage the development of networks of Centers, coordinated by NACC, with common interests such as Lewy body disease, FTD, vascular disease, or other neurodegenerative diseases, where studies using pooled samples and data could increase statistical power.
A fourth recommendation was to decrease the emphasis on late stage Alzheimer’s disease and concentrate cutting edge research more on the transition from normal aging to mild cognitive impairment (MCI) and to full-blown AD as well as to comparisons to and overlap with other neurodegenerative diseases.
Page last updated Sep 26, 2008
