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Data concerning various tissues stored at the Alzheimer's Disease Centers (ADCs) have been gathered by NACC for subjects enrolled at the ADCs since 1984. Tissues include those obtained at autopsy (e.g., brain) as well as those obtained from living subjects (e.g., serum, DNA). As of December 2009, approximately 77,000 subjects were enrolled in the Minimum Data Set (MDS) clinical data (enrollment ended in 2005); between 2005 and 2009 approximately 20,000 subjects have been enrolled in the Uniform Data Set (UDS) clinical data (enrollment is ongoing); and from both the MDS and UDS there have been approximately 10,000 autopsies with neuropathology (NP) data stored at NACC (enrollment is ongoing).
The subjects included in these data sets may be "normal" or may have clinical or pathologic features consistent with AD or other neurological disorders. The tissues reported as stored at the ADC may in some cases not reflect the current inventory at the ADC itself, though NACC does ask the Centers to update their data when possible.
Potential neuropathology specimens include: frozen, formalin-fixed, and paraffin-block brain tissue, as well as postmortem CSF. Clinical specimens include DNA, serum, and antemortem CSF. The range and definitions of clinical and pathological features characterizing the subjects supplying these specimens can be seen by examining the MDS, UDS, or NP data forms or guidebooks.
If you would like a do-it-yourself summary describing specimens available, for example, by clinical diagnosis or pathologic features, please click above. The QUICK LOOK page will allow you to generate cross-tabulated summaries of tissue availability.
If you wish to go beyond the capabilities of the Quick Look page and locate ADCs where specific tissues may be housed, please use the Tissue Location Form to describe the specimens of interest. NACC will contact you to discuss in detail what tissues you seek. If the specimens you need are reported to be available, NACC will then request permission from the ADC(s) that hold the specimens to put you in contact with them. From that point, you will negotiate directly with the ADC(s) to determine whether and how Material Transfer Agreements may be established, as well as which specimens are available in sufficient quantities to share, and any costs associated with their transfer.