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The Alzheimer’s Disease Genetics Initiative: Multiplex Family Study

This update provides progress reports, pedigree approvals, sample processing, LOAD diagnosis guidelines, the importance of autopsies, participating centers, consent forms status, pedigree characterization, sample availability, LOAD manual updates, and data call reminders.

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The Alzheimer’s Disease Genetics Initiative: Multiplex Family Study

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  1. The Alzheimer’s Disease Genetics Initiative: Multiplex Family Study October 17th Meeting—San Francisco, CA Columbia University, NCRAD, and the National Institute on Aging

  2. NCRAD and LOAD Update Agenda • Progress report • Pedigrees approved and samples at NCRAD • NCRAD family processing and referrals • Protocol explanation • Review of LOAD diagnosis guidelines • Center travel and the travel list • LOAD autopsies • Importance of autopsies • Review of NCRAD protocol • Who is doing what: discussion

  3. Centers participating in the Genetics Initiative • Boston University • Columbia University • Duke University • Indiana University • Northwestern University • Massachusetts General Hospital • Mayo Clinic (Rochester and Jacksonville) • Mt. Sinai • Oregon Health Sciences University • Rush University • University of Alabama • University of California, Los Angeles • University of Kentucky • University of Pennsylvania • University of Pittsburgh • University of Southern California • University of Texas Southwestern • University of Washington • Washington University

  4. Consent forms status 14 Centers have an approved form New Centers are working on IRB application

  5. Pedigrees approved: active Centers only • As of 10/14/03: • 205 pedigrees approved • Staggered start: of 10 original • Centers, most active as of 7/03 • IRBs and MTA have slowed the • progress

  6. The number of pedigrees approved

  7. Pedigree characterization 54% of the pedigrees approved have 3 or more affected individuals

  8. Samples at NCRAD as of 10/14/03

  9. Total Families at NCRAD 10/14/03 5/22/03 7/11/03 10/2/03 3/20/03 3/25/03 4/21/03 4/24/03 5/15/03 6/24/03 7/18/03 8/29/03 9/19/03 9/26/03 2/28/03 3/7/03 5/8/03 7/3/03 9/8/03

  10. Collaboration between Centers: 8 joint families

  11. LOAD Manual • Version 1 has been available since March 2003: some sections (data set) have been updated and distributed • Version 2 will be web based and accessible at NCRAD’s website—coming online soon! • Each section thereafter will be updated as needed and coordinators will be notified

  12. LOAD data • Currently no LOAD data at NCRAD • Centers were asked to do a test run of the data set—sent to Columbia • Minor coding changes were made • Quarterly data call: data is due by the end of October!!!

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