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

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

Centers participating in the Genetics Initiative 1.Boston University 2.Columbia University 3.Duke University 4.Indiana University 5.Northwestern University 6.Massachusetts General Hospital 7.Mayo Clinic (Rochester and Jacksonville) 8.Mt. Sinai 9.Oregon Health Sciences University 10.Rush University 11.University of Alabama 12.University of California, Los Angeles 13.University of Kentucky 14.University of Pennsylvania 15.University of Pittsburgh 16.University of Southern California 17.University of Texas Southwestern 18.University of Washington 19.Washington University

Consent forms status Approved forms Boston University Columbia University Duke University Indiana University Massachusetts General Mayo Clinic Mt. Sinai Oregon Health Sciences U University of Kentucky University of Pennsylvania University of Pittsburgh University of Texas, SW University of Washington Washington University In preparation/review Northwestern University Rush University University of Alabama University of California, Los Angeles University of Southern California 14 Centers have an approved form New Centers are working on IRB application

Pedigrees approved: active Centers only Center# Approved Boston University21 Columbia University35 Duke University5 Indiana University8 Massachusetts General5 Mayo Clinic20 Northwestern University2 Mt. Sinai2 Oregon Health Sciences U22 University of Kentucky4 University of Pittsburgh4 University of Washington18 Washington University35 NCRAD (LOAD only)24 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

The number of pedigrees approved

Pedigree characterization # affected individuals per family # pedigrees approved % % % or more % of the pedigrees approved have 3 or more affected individuals

Samples at NCRAD as of 10/14/03 Center# Samples# Families Boston University*3111 Columbia University11728 Duke University175 Indiana University185 Mayo Clinic4312 Mt. Sinai22 Oregon Health Sciences U95 University of Kentucky91 University of Pittsburgh135 University of Washington319 Washington University8824 Total378107

Total Families at NCRAD 2/28/03 3/7/033/20/033/25/034/21/034/24/035/8/035/15/035/22/036/24/037/3/037/11/037/18/038/29/039/8/039/19/039/26/03 10/2/03 10/14/03

Collaboration between Centers: 8 joint families Ascertainment CenterCollaborative Center University of WashingtonColumbia University UCLA Indiana UniversityColumbia University University of WashingtonUniversity of Pittsburgh Mayo JacksonvilleColumbia University Mt. SinaiColumbia University University of WashingtonIndiana University Boston UniversityColumbia University

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

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!!!