The Gift of Life Collection
The Center for Alzheimer's Care, Imaging and Research at the University of Utah developed the Gift of Life Outpatient Autopsy Planning Program in response to an unmet need in the Intermountain West. The Program was designed to provide access to diagnostic postmortem services otherwise unavailable for families. The Program offered pre-arrangements so that a brain autopsy could be performed expeditiously to carry out the documented wishes of the family (often including the affected individual). All families documented their desire to have autopsy results and tissue shared with qualified researchers.
Study Participants
The collection consists of specimens from 238 individuals with neurodegenerative disease enrolled in the Gift to Life Outpatient Autopsy Planning Program at the University of Utah in Salt Lake City from 2006 to 2021. Mixed source frozen tissue was provided to NCRAD for 227 individuals and whole fixed brain is available for 84 individuals. NCRAD has DNA extracted from the mixed source frozen tissue.
The NCRAD dataset lists what specimens are available for each case. Primary neuropathological diagnosis includes Alzheimer's disease in 67%, dementia with Lewy bodies in 20%, frontotemporal degeneration (FTD) in 7%, progressive supranuclear palsy in 4%, corticobasal degeneration, vascular dementia, isolated amyloid angiopathy, and tangle-only dementia are also represented. No pathological abnormalities were identified in a patient with FTD phenocopy. In addition to primary neuropathological diagnoses, details assessment of specific neuropathological features is provided in the NCRAD dataset along with the relevant comments of the neuropathologist.
Available Data
NCRAD holds detailed, anonymous extensive demographic, diagnosis, clinical and neuropathological phenotypic date. It also has copies of anonymized original autopsy reports and letters explaining to families autopsy findings and their clinical relevance. Summary fields in the NCRAD data set show what additional data are available upon request and completion of a material transfer agreement with the University of Utah. Extensive, detailed, anonymized clinical notes and test results from cognitive specialists, neuropsychologists, psychiatrists, nurse practitioners, and social workers are available for individuals seen in the clinic by application to University of Utah Health System. Results of one or more comprehensive clinical neuropsychological examinations are available for 126 cases. Most have MRI scans, many of which are acquired in 3-dimensional isovoxel protocols allowing quantitative analysis. Regionally analyzed FDG-PET data and statistical maps are available for 73.
Available Biospecimens
The Collection consists of brain specimens from 238 individuals with neurodegenerative Disease. Whole fixed brain tissue is available for 94. Extracted DNA from mixed tissue source is available from 227 subjects, 84 of which also have fixed tissue.
Neuropathological examinations are a collaboration of the Department of Pathology and ARUP laboratories at the University of Utah. It is ARUP policy to keep paraffin blocks and prepared slides from all autopsy cases indefinitely. Thus, paraffin blocks and prepared slides are available for most cases, unless the case was referred out. Slides and blocks can be obtained for review and for additional studies by contacting Dr. Mao at the University of Utah.