Assessment of Current Practices Across Alzheimer's Disease Research Centers Biorepositories

Abstract

In 1984, the National Institute on Aging developed the Alzheimer's disease centers program. The main goal of these centers is to advance the understanding of Alzheimer's disease and related dementias (ADRD) through comprehensive patient evaluations and cutting-edge research in pathology, laboratory medicine, education, and scientific discovery. The neuropathology core of the Alzheimer's Disease Research Centers (ADRCs) collects postmortem brain tissue from consented donors ranging from cognitively normal individuals to those with late-stage dementia, whose samples and data can be shared around the world to further advance knowledge, diagnosis, and to eventually find cures for ADRD. Although recommended guidelines for biorepositories exist, we aimed to understand the current practices within neuropathology cores across the ADRCs. A survey was developed that focused on information related to sample processing methods, biospecimen requests, financial costs related to the repository, and data management. This survey was distributed to 28 current and former ADRC neuropathology cores. The survey obtained a response rate of 82% (23/28). Although most centers were consistent in responses related to sample processing and storage, they varied widely in processes by which neuropathological samples are shared and cost recovery mechanisms. The results of this survey provide benchmark data on practices within neuropathology cores across ADRCs and the overlap with biorepository best practices. Future studies focused on understanding factors that may influence current practices (such as available funds and personnel) are need to aid in minimizing barriers to optimally follow best practices. Sharing these data among ADRCs will allow for improvement in workflows and working toward cures for ADRD.

Keywords: Alzheimer's disease; biobank; biorepository; neuropathology.

FIG. 1.

Survey results and question categories. Survey questions covered five main categories of biorepository management: sample processing, sample sharing, data, storage, and financial costs (complete survey questions are given in Supplementary Data). The results of each survey question (numbered according to order in the survey; in the top left corner of each corresponding pie chart) are shown in each pie chart. FFPE, formalin-fixed paraffin-embedded; MTA, material transfer agreement; QC, quality control; QR code, quick response code.

FIG. 2.

Biorepository workflow. A simplified version of the overall workflow of a biorepository, as suggested by Vaught and Lockhart—identifying critical stages throughout the process of maintaining a rigorously maintained biorepository (figure created with BioRender.com).