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Administrative Department
The Administrative Core of the NIA ADRC is built on the administrative structure of the University Hospitals of Cleveland (UHC) and Case Western Reserve University (CWRU). The primary goals of the Administrative core are to provide the NIA ADRC with overall direction in developing and achieving the highest standards of excellence in the conduct of basic and clinical and behavioral research into the causes, diagnoses and treatments of AD. The specific aims are i) to coordinate and promote interdisciplinary interaction among Alzheimer investigators, ii) to monitor the Core facilities and insure that they provide high quality resources for eligible Alzheimer investigators, iii) to assure and promote the efficient use of these shared resources, and iv) to monitor and maintain the fiscal integrity of the ADRC. One self-evident focus of our efforts will be to achieve these aims among the members of the ADRC itself. Equally important, however, is to assure the integration of UH/CWRU ADRC within the broader context of our entire academic health center, as well as within the larger national and international community of Alzheimer's researchers. Finally, our efforts are aimed at growing and fostering the critical relationship of our Center with the community at large, particularly the local Alzheimer's Association chapters. To accomplish these goals, the Administrative Core is divided into principal leadership (director, clinical director, and administrative director), executive committee, biomedical research group, clinical research group, pilot grant review committee and external advisory board. The success of this Core in the past ten years is evident in our progress; the promise for the next five years is extraordinary and is evident in our plans.
Caregiver Department
The Caregiving Core (CGC) is designed to: 1) continue development and maintenance of a registry of family caregivers of persons with Alzheimer's disease and related dementias (ADRD) and a comparison group of persons who are not ADRD caregivers; 2) characterize CGC Registry members across time and across major phases of the caregiving trajectory (i.e., in the community, after long-term care placement, and after bereavement); and 3) support development of interdisciplinary caregiving research locally, regionally and across Alzheimer's Disease Centers. The CGC is organized into three functional units to achieve these aims: 1) Recruitment and Retention, which develops and monitors the CGC sample to ensure enrollment of adequate numbers of subjects in targeted subgroups; 2) Sample Characterization and Measurement, which initiates and manages annual assessments of subjects, edits and codes data, and coordinates data set development with the Data Management and Analysis Core; and 3) Caregiving Research Development and Facilitation, which conducts specific activities involving local, regional and national ADRD caregiving researchers and their trainees to promote use of CGC resources and the development of innovative multidisciplinary research projects for external funding. The CGC is based on the premise that facilitating and enhancing the quality of research on caregivers and caregiving contributes significantly to the effectiveness of research on ADRD, particularly as it relates to health care delivery and policy.
The data collected are provided to the Data Management and Analysis Core for computerization and construction of merged data sets of CGC and Clinical Core data for use by investigators. The CGC collaborates on recruitment with the Clinical Core, the Minority Recruitment Satellite, and the Education and Information Transfer Core to maximize participation of caregivers and persons with ADRD in ADRC-supported projects.
Clinical Department
The Clinical Core recruits and evaluates subjects with Alzheimer's Disease (AD) and related dementia syndromes, along with healthy age-matched adults. It provides well-characterized clinical and control volunteers for referral to investigators studying AD in greater Cleveland, contributing to nationwide efforts to understand this devastating illness. It consists of four functionally specialized sections: 1) The Operations Section provides support for the ADRC's contact with research volunteers with dementia. This section will identify, attract, contact and enroll potential research volunteers. It also facilitates subject retention by maintaining regular contact with registered volunteer families and providing services intended to maintain close and supportive working relationships with families through to autopsy. Furthermore, this section maintains a computerized registry of subjects, allowing the Clinical Core to match clinically characterized and well motivated volunteers to the criteria set for each study. Finally, it coordinates referrals of participants to investigators, while minimizing the potential for subject attrition from undue burden. The activity of the operations section is closely coordinated with the efforts of the Minority Recruitment Satellite and the Caregiving Core in order to facilitate enrollment and referral of a demographically representative pool of volunteers. 2) The Illness Classification Section, is focused on obtaining information on health history, functional status, and physical/neurologic examination findings, with the intent of fulfilling diagnostic criteria for AD or other recognized dementia syndromes. 3) The Neuropsychology Section collects and interprets data on the cognitive and neuropsychological performance of participants to support diagnosis and severity measures, and 4) Behavioral Symptoms Section, obtains information on, and assesses the impact of, the affective and motivational state of demented individuals. The resulting information is provided to the Data Management and Analysis Core for final computerization and provision of data to investigators. The Clinical Core also collaborates on recruitment with the Caregiving Core and facilitates the acquisition of autopsy material for the Neuropathology Core.
Data Management and Analysis Department
The central goal of the Data Management and Analysis Department (DMAC) is to develop and implement database management and analysis policies and procedures to support research of the highest quality. As a result, the focus of DMAC activities continues to be on the maintenance of carefully developed and monitored data collection, coding, entry, and cleaning procedures. In addition, because a large and complex database has been developed over the initial ten years of the ADRC, DMAC activities in the area of data analysis have increased steadily. The growth of the ADRC database and expanded staff responsibilities have necessitated the development of more sophisticated quality management procedures that will continue to be an important focus during the new grant period. DMAC has created procedures that facilitate the entry of data with minimal errors and check for logical inconsistencies among the data. Quality management is a daily effort of DMAC.
In the past, data management and analysis have functioned as a component of the Clinical Core. In the renewal application, DMAC is designated as a Core, given that the services of DMAC have grown beyond the Clinical Core. The main area of emphasis has been and continues to be on working with investigators of research projects that use Clinical Core data. In addition, however, DMAC has supported work of investigators from the Caregiving and Neurpathology Cores and from ADRC projects and has provided consultants to agencies such as the Ohio Council of Alzheimer's Association for survey design, coding and analysis. Consequently, designating DMAC as a core appropriately reflects the extent of the services that are provided, not only to the ADRC, but also to the surrounding community.
The specific aims of DMAC center around maintaining the Center Database, facilitating the collection and computerization of accurate data, implementing data security protocols, assisting investigators in the design and execution of analysis plans, and facilitating data transfer from the ADRC to the NIA Data Coordinating Center.
The Education and Information Transfer Department
The Education and Information Transfer Core (EITC) has two central goals: to offer training opportunities for professionals in both clinical and research skills related to Alzheimer disease and related dementias (ADRD), and to offer outreach programs that educate family members and other caregivers about the AD and the ADRC. The greater Cleveland area has two particular strengths related to education and information transfer: 1) a vibrant and well-funded local network of bench, behavioral, clinical, and social researchers studying a vast spectrum of topics in ADRD, and 2) an exceptionally strong local Chapter of the Alzheimer's Association and a dynamic Ohio Council representing all 13 Chapters in the state. The EITC will serve as the catalyst to facilitate interactions among ADRC components, the local network of AD researchers, and Chapters of the Alzheimer's Association to enhance education and information dissemination throughout northeastern Ohio, the entire state, nationally, and internationally. As outlined in the application, the EITC will build on prior work in conference sponsorship, Chapter collaboration, technology-based support for caregivers, and the development of educational curricula to reach these goals. The EITC will use the following methods and programs for disseminating and training activities over the next five years: 1) Professional Outreach: The EITC will continue the strong tradition of sponsoring and co-sponsoring conferences and symposia. The ADRC website will be revised and expanded and a multimedia "toolshed" will be established which will provide investigators with slide production and visual graphic aides for presentations. Projects on which the EITC will collaborate with other ADRCs include an examination of issues of diagnostic disclosure among primary care providers with colleagues at Michigan and Oregon and a regional conference co-sponsored with the Indiana ADRC. 2) Chapter and Family Outreach: The EITC will expand and revise the website for the Cleveland Area Chapter and disseminate results from the Fairhill Community Dialogue Series on Ethics. On a broader context, the EITC will post and maintain a website for Ohio Council and offer Chapters in Ohio regular research updates and access to a research "hotline". The EITC will also convene research roundtable discussions on ADRC research with Chapter executive directors. With colleagues from the Michigan ADRC, the EITC will collaborate on a managed care initiative. In addition, the award-winning on-line Alzheimer's Disease Support Center will be expanded and enhanced.
Neuropathology Department
The definite diagnosis of Alzheimer disease (AD) and most other dementing illnesses could be definitively established only after histological examination of brain tissues and in some cases after biochemical and genetic analyses. The purpose of the Neuropathology Core is to:
Provide adequately preserved and well characterized human and animal brain tissue samples for the biochemical and morphometric studies planned in the research proposal and for the ongoing research program supported by other grants.
Identify the neuropathologic changes in the subjects with cognitive and/or neurological deficits and to investigate the presence of pathologic alterations in control subjects.
Establish number and distribution of selected lesions using morphometric analysis to correlate severity and topography of the lesions with cognitive neurological findings when requested by the investigators.
Since the ADRC includes studies on animal models of AD the fifth Specific Aim of the Core is:
Determine presence, type, and severity of structural lesions in transgenic (Tg) mouse models of AD or other conditions. Structural lesions will be identified and characterized by histological, morphometric, and immunohistochemical examinations.
Finally, the Core will also:
Adequately store frozen and fixed tissues for future studies which may be carried out in this and other institutions.
During the previous five years, the Core has examined and stored 183 brains, 123 of which were diagnosed AD pure or in combination with other processes. With the contribution from other samples, the Core has also examined and stored 554 brains, 397 of which were prion diseases. These tissues have been used in 154 publications. The essential role and productivity of the Core will be maintained during the next five years.
Minority Recruitment Satellite
The Minority Recruitment Satellite will extend the past successes achieved by the Cleveland ADRC in increasing the enrollment of African Americans in the ADRC registry, with the following specific aims: 1) To achieve an African American representation of 16% of all participants in the Research Registry and limit the attrition rate among African Americans to 5% or less per year; 2) To maintain an advisory board of leaders within Greater Cleveland's African American community to advise and assist with community outreach, cultural responsivity, and research participation; 3) To establish a satellite research recruitment site at the University Hospitals Health System (UHHS) Buckeye Health Center, a neighborhood health center, with Case Western Reserve (CWRU) affiliation, serving low income African Americans; 4) To identify successful minority recruitment strategies, in collaboration with recruitment efforts of the Clinical and Caregiving Cores, and share information about these strategies with researchers in Alzheimer's disease and related dementias (ADRD); 5) To establish and maintain programs, in collaboration with the Education and Information Transfer Core (EITC), that engage African Americans in Alzheimer's disease and related dementias awareness, education, and research participation.
The design of the Minority Recruitment Satellite will emphasize the continuity of staff and community contacts who have led to past
successes, and the refinement of strategies to convert the visibility of the Cleveland ADRC into inquiries from African Americans
affected by ADRD and their families, and these inquiries into actual research participants. At least one publication is planned
to report on past successes and the results of these refinements. New initiatives will include (1) establishing a satellite
research recruitment site at the UHHS Buckeye Health Center, modeled on the successful, seamless referral system between the UHHS
ElderHealth Center and the University Alzheimer Center (UAC); (2) presenting a national conference in 1999, in collaboration with
the EITC, on the theme of minority participation in research; and, (3) fostering and supporting, in collaboration with the Clinical
Core, Caregiving Core, and other UAC and affiliated investigators, specific research studies that are relevant to the African
American community.
Information on the Eighth Day of the Week video.
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