Alzheimer's Disease Education and Referral Center

Alzheimer's Disease Genetics Study

Alzheimer's Disease Genetics Study

Overall Status: 
Recruiting
Brief Description: 

The purpose of the Alzheimer's Disease Genetics Study is to identify the genes that cause Alzheimer's disease. One of the ways in which the risk-factor genes for late-onset Alzheimer's disease can be investigated is by identifying and collecting genetic material from families with multiple members diagnosed with Alzheimer's that began at age 60 or older.

Patient Qualifications: 
Min AgeMax AgeGenderHealthy Volunteers
N/A
N/A
Both
Accepts Healthy Volunteers
Inclusion Criteria: 

  • Two living family members diagnosed with Alzheimer's disease with any age of onset
  • At least one other affected or unaffected relative willing to participate
  • Biological samples available: fresh blood, immortalized lymphoblastic cell lines, or 3-5 grams of frozen cerebral cortex (fixed samples are not accepted)
  • Please note: This study does not include genetic counseling. Because no personal identifying information such as name or date of birth is attached to samples, results of individual tests are not available to participants or family members.

Exclusion Criteria: 

  • Known mutation in an early-onset Alzheimer's disease autosomal dominant gene
  • Member of a family that was included in the National Institute of Mental Health Alzheimer's Disease Genetics Sib Pair collection

Detailed Description: 

The purpose of the Alzheimer's Disease Genetics Study is to identify the genes that cause Alzheimer's disease. One of the ways in which risk-factor genes for late-onset Alzheimer's can be investigated is by identifying and collecting genetic material from families with multiple members diagnosed with the disease that began at age 60 or older. Families will be evaluated for a medical diagnosis and other factors. If eligible, blood samples will be collected from participants to establish cell lines. If one of the identified family members is deceased, DNA will be extracted and stored from autopsy samples.

Qualifying families will have at least three members participating in the study: any two living family members diagnosed with Alzheimer's disease with an onset at age 60 or older and a third member with an age of onset greater than 50, if affected, and 60 or older, if unaffected. The goal is to recruit 1,000 families in 3 years. This research will include a collection of samples from ethnic/minority populations and other special populations, including African Americans, the Amish, Hispanics, Asian Americans, and Japanese-Americans.

Study sites are located all over the United States, and arrangements may be made for eligible families who do not live near a participating site. Local sites, including the NIA-sponsored Alzheimer's Disease Centers, will collect clinical and demographic data from these families, and the sites will send coded data (without identifiers) to the National Cell Repository for Alzheimer's Disease (NCRAD) at Indiana University. The biological samples and data from these families will be available to qualified researchers, who must sign an agreement to protect the privacy rights of participants in this study. An oversight committee and the coordinator of the NIA Alzheimer's Disease Genetics Study will review and monitor the process of family identification and enrollment, data collection, and the establishment of cell lines. This repository of DNA and cell lines was developed in hopes of discovering risk-factor genes that contribute to late-onset Alzheimer's.

Locations: 
Map MarkerCityStateStatusPrimary Contact

Geolocation is 0, 0

Nationwide
Indiana
Recruiting
Study Coordinator
1-800-526-2839
alzstudy@iupui.edu
Lead Sponsor: 
Agency
Indiana University
Collaborator Sponsor: 
Agency
National Institute on Aging (NIA)
Facility Investigators: 
NameRoleAffiliation
Tatiana M. Foroud, PhD
Principal Investigator
National Cell Repository for Alzheimer's Disease (NCRAD), Indiana University
Study Contact: 
NamePhoneEmail
Study Coordinator
1-800-526-2839
Locations
 
 
ClinicalTrials.gov ID 
NCT00064870 (follow link to view full record on ct.gov in new window)
Official Title: 
Alzheimer's Disease Genetics Study
Study Start Date: 
June 2002
Study End Date: 
June 2016
Enrollment: 
3000