|
MANAGING THE DATA - THANKS TO DONNA SHEEDY
INTEGRATION OF CLINICAL, PATHOLOGICALY, NEUROPSYCHOLOGICAL AND RESEARCH DATA AT THE NSW TISSUE RESOURCE CENTRE.
D. Sheedy; T. Garrick; I. Dedova; C. Harper.
The University of Sydney, Discipline of Pathology, Sydney, Australia 2006
The New South Wales Tissue Resource Centre (TRC) is an established Australian brain tissue bank, located within the Discipline of Pathology at, The University of Sydney. The TRC facilitates research for both the national and international neuroscience research communities. Aim: To develop a database system that reflects the various activities of this facility, the TRC and the recent incorporation of the Australian Brain Donor Programs and linkages to the Australian Brain Bank Network. The main objectives in planning this system were to provide a secured database system that is inter-related with the functional activities of the primary main areas of the TRC and, that amalgamates clinical, pathologicaly, neuropsychological and research data. It must also reflect the needs of the researchers. Method: Filemaker Pro was used to develop and host the TRC relational databases. They were developed for each primary area of the TRC being: pre mortem donor programs (Using our Brains and Gift of Hope), clinical, neuropathology, tissue collection, neuropsychological assessments and research facilitation with requests and outcomes. The program linkage was made to the Australian Brain Donor Program databases to enable data sharing. Results: There are ten main relational databases comprising 203 layouts and 1400 fields. The database system has managed 2466 registrations of interest for the brain donor programs and there are currently 1037 donors consented. Neuropsychological assessments have been performed on 639 donors and 93 have undergone voluntary MRI scans. There have been 38 cases retrieved through the Using our Brains donor program giving a total of 507 cases brains within the tissue collection. Clinical and pathological data is available on these cases and 12 cases had completed neuropsychology assessments. The TRC has provided tissue to 248 research projects the majority being molecular biological studies. Annual evaluations forms are sent to researchers so we can review progress and report research outcomes; to date there have been over 200 abstract and 95 peer-reviewed journal publications.
Conclusion: The integration of clinical, pathologicaly, neuropsychologicaly and research data enhances the potential value of the TRC and the research projects generated through this database management system. The TRC database system has further evolved to enable linkages to the new initiatives of the Australian Brain Donor Programs and the Australian Brain Bank Network.
|
