1. NACC National Alzheimer’s Coordinating Center Neuropathology Core Leaders Meeting NACC Update, June 2004 Cleveland W. A. Kukull, PhD

2. NACC National Alzheimer’s Coordinating Center NACC Renewal ! 07/01/2004 – 06/30/2009 Excellent score received The check is in the mail… –“–“But there may be a reduction in the amount requested…” Probably, no NACC collaborative projects funded during first year All other functions remain intact, including plan to expand clinical data (UDS) Encourage small/data analysis projects

3. NACC National Alzheimer’s Coordinating Center NACC Collaborative Studies Huge increase in productivity 55 paper + abstracts published or submitted 10 grants submitted using data “Most papers and abstracts” Award –Dr. Bernardino Ghetti, Indiana U.

4. NACC National Alzheimer’s Coordinating Center Neuropathology Data System Continuous data collection Web data entry –A–Add-on files and replacement files accepted Data “Frozen”: July 1 & Jan. 1 –C–Consistency for reports and analysis –D–Data freezers continuously monitored

5. NACC New NACC Web Submission System Complete submission through website includes: –All error checking programs, built-in –Error correction/editing –“Alert”/ “discrepancy” verification –“Certification Report” generation

6. NACC National Alzheimer’s Coordinating Center Today’s Data Data from 32 ADCs included 7939 NP forms/subjects –80% of all autopsied subjects in MDS New “Data Reports” will be generated after July 1 data freeze

7. NACC National Alzheimer’s Coordinating Center Agonal State Survey Does your ADC collect agonal state? –14/28: “Yes” If “yes”, how is agonal period defined? –Last 24 hours (4) –Last 1 – 3 days (2) –Data from last months/weeks (3) –Indefinite time periods/other/unk (4) –Brain proteins, RNA, DNA integrity (1)

8. NACC National Alzheimer’s Coordinating Center Agonal Data Collection When collected? –10/14 postmortem only; 1/14 ante only –3/14 post- and ante-mortem Who collects? –9/14 NP Core; 8/14 Clinical or other Core –1/14 Family or caregiver

9. NACC National Alzheimer’s Coordinating Center Agonal Data Collection How are data collected? –P–PM interview with caregiver or MD (12/14) –C–Chart review (7/14) –I–Interviews with nurses/providers/relatives (5/14) –D–Derived from autopsy (1/14) More than one response was OK

10. NACC Agonal conditions, circumstances and events Of 19 listed items: –Clinical and NP collect ~47% Other items: –Supplemental fluids, feeding tube, coma, oxygen, CPR, seizures, “anything relevant” How are data stored? –6/14 store electronically by clinical, NP or other core

11. NACC National Alzheimer’s Coordinating Center Tissue testing Routine tests for tissue integrity –11/28 (39.3%) Tests performed –6/11 pH –5/11 Western blot –6/11 RNA (various), HIV (rarely) Collaborative Project Idea: –“Evaluation of methods for measurement of tissue integrity; with application to ADCs”.

12. NACC National Alzheimer’s Coordinating Center Inventory System: A tool for you from NACC Access through NACC website Customized by to meet your needs –NACC will work with you –Flexible, expandable and searchable Data is separate and secure: no access by others Nightly back-ups by NACC Easy to use

13. NACC National Alzheimer’s Coordinating Center