About The Arizona Alzheimer’s Consortium
The Arizona Alzheimer’s Consortium (AAC) is the nation’s leading model of statewide collaboration in Alzheimer’s disease research. Established in 1998, the Consortium capitalizes on its participating institutions’ complementary strengths in brain imaging computer science, genomics, the basic and cognitive neurosciences and clinical and neuropathology research to promote the scientific understanding and early detection of Alzheimer’s disease and find effective disease-stopping and prevention therapies. It also seeks to educate Arizona residents about Alzheimer’s disease, research progress in the state and the resources needed to help patients, families and professionals manage the disease. The Consortium is determined to find effective treatments to halt the progression and prevent the onset of Alzheimer’s disease without losing a generation.
The Arizona Alzheimer’s Consortium is a 501(c)(3) organization that includes the state-supported Arizona Alzheimer’s Research Center (AARC), the National Institute on Aging (NIA)-funded Arizona Disease Core Center (Arizona ADCC), and independently funded research programs. Its seven member institutions include: Arizona State University, Barrow Neurological Institute, Mayo Clinic Arizona, Banner Sun Health Research Institute, Translational Genomics Research Institute (TGen), University of Arizona, and Banner Alzheimer’s Institute.
The Administrative Core provides the scientific leadership, organizational structure, data management, and support needed to fulfill the shared mission of our proposed NIA-sponsored Arizona Alzheimer’s Disease Core Center (ADCC) and our state-supported Arizona Alzheimer’s Research Center (AARC). It promotes our Center’s integration, productivity, and growth, fosters communication and interaction among investigators, and ensures its scientific and fiscal accountability. The Administrative Core reaches out to, shares resources and data with, and promotes productive collaborations with researchers inside and outside of Arizona. It will work closely with other Alzheimer’s Disease Centers and the National Alzheimer’s Coordinating Center. It seeks additional support from the state of Arizona to recruit new researchers and strengthen shared resources. It promotes interactions between the scientific and lay communities in Arizona in support of our Center’s scientific and educational mission, public recognition, and productivity.
Our Scientific Leadership Board includes the ADCC Executive Committee (responsible for the administration of the ADCC) and our previously established AARC Internal Scientific Advisory Committee (responsible for the administration of the AARC). It provides scientific direction, allocate ADCC and AARC funds, coordinates, integrates, and provides administrative support for ADCC and AARC components and activities; it works closely with the clinical core, neuropathology core, and investigators to ensure the accuracy, confidentiality, dissemination, and utilization of data; and it actively promotes and constantly reviews the Center’s progress. Our External Scientific Advisory Committee reviews the Center’s organizational and scientific progress each year, and provides strategic, organizational, and scientific recommendations. Our Ad Hoc Review Program provides a mechanism for the solicitation, competitive review, support, and monitoring of ADCC-sponsored pilot studies.
As previously noted, the AARC has continued to benefit from regular in-person meetings of our ISAC, which oversees and coordinates the complementary AARC and ADCC components of our Alzheimer’s disease research. We remain heartened by the ADCC’s organizational maturation during the past two years, the spirit of collaboration among our researchers and institutions, and the shared ownership in the success and accountability of our research program.
Ad Hoc Review Program
The Arizona Alzheimer’s Consortium Ad Hoc Review Program is administered by Dr. Carol Barnes, Director, Ad Hoc Review Program. A Request for Proposals for pilot grant applications is solicited each fall with an application deadline of mid-February. The funding period for pilot projects is July 1 to June 30. Click here to access the latest Request for Proposals. (PDF file will open in a new window.)
Database Management Program
Over the past year, the database management program, as part of the Administrative Core, has focused on implementing a series of new database programs, features, and procedures to expand and further enhance our ability to provide a high level of quality control for data entry and storage of ADC data, ease of access of data for Arizona ADC investigators, access to statistical support, and protections of subject confidentiality that will lead to the planned establishment of a Data Management and Statistics Core. Specifically, in the past year:
- We hired a new full-time data manager as part the central data management team.
- We initiated a data entry in-service meeting that will take place twice per year to review and discuss database procedures with data entry personal from each clinic data entry site.
- The new data manager attends every ADC Clinical Core meeting and remains in close contact with all data entry personnel in the Clinical and Neuropathology Cores.
- We have continued routine monthly data calls in which data entered at each clinic data entry site is transferred to the central database for merging, data review, and cleaning.
- We have established a standard set of computerized scripts to screen for potential inconsistencies and incorrect data values in the central database that is performed on a monthly basis.
- We have established a routine Participant Analysis Report where the Clinical Core Director receives monthly updates on the numbers of enrolled subjects and key demographic and clinical characteristics for ADC enrollees.
- We have established a random selection data check where each clinic sends paper copies for 20% of the newly enrolled cases and 10% of previously enrolled cases without replacement on a bi-monthly basis with all identifying information removed to directly compare data entry with data collected on the actual data forms.
- We have implemented monthly Data Check Reports that are sent to each clinic data entry site to facilitate clarification and correction for any data inconsistencies and incorrect values that are found through all data cleaning procedures.
- We have attended the annual ADC Data Managers meeting as part of the annual Directors meeting for updates and interaction with the NACC enhancements.
- We have revised and enhanced our genetics database, including a new on-line help file for data entry.
- We have created a new subject participation database to track the participation of Arizona ADC subjects in other projects and have implemented feedback provided by ADC investigators.
- We have instituted refinements in the ADC central database based on ongoing feedback from ADC investigators to further enhance its utility and ease of use,
- We have prepared the database procedural manual for dissemination to data entry personal at each clinic site.
- We were in full compliance with the 2003 NACC data call requests, submitting our MDS and neuropathology data to the NACC prior to the required deadlines.
- We have prepared a quarterly data disk providing data in multiple formats to be disseminated to the identified ADC investigators.
- We have provided data to all ADC designated investigators who have requested access to data and information on the database in a timely fashion, usually within 24 hours of the request. Further, over this past year, we have been exploring the enhancement and expansion of our statistics component to assist ADC investigators with statistical and experimental design issues.
The Clinical Core includes six geographically distributed clinical sites for the clinical, neuropsychological and genetic assessment, diagnosis, enrollment, annual follow-up and clinical study of about 500 patients with Alzheimer’s disease and other dementias, patients with mild cognitive impairment (MCI) and healthy elderly control participants, most but not all of whom are enrolled in the Consortium’s Brain Donation Program.
Data Management and Statistics Core
The Data Management and Statistics Core ensures the standardized acquisition, accuracy, and centralized storage of data acquired in the Consortium’s Clinical and Neuropathology Cores.
Education And Information Core
The Education and Information Core provides educational, informational, and training opportunities for researchers, professional and family caregivers, the general public and Arizona’s underserved Latino and American Indian Communities.
The Neuropathology Core provides precise autopsy diagnoses and extraordinarily high quality brain tissue (i.e., a median post-mortem interval of less than 3 hours), cerebrospinal fluid and other biological samples from neuropathologically well characterized brain donors for the neurobiological study of AD, related disorders and normal brain aging-resources that are used by researchers throughout Arizona and around the world.