Feb 13, 2009

Alzheimer's Disease Genetics Study--Clinical Trial

By Bob DeMarco
Alzheimer's Reading Room

This is an important genetics study that has been going on for seven years. They are still recruiting new participants. Please share this information with others that you think might be interested in participating. We can all benefit from the findings of this important.

If you are interested and/or qualified please go here for more information.

The purpose of the Alzheimer's Disease Genetics Study is to identify the genes that are responsible for causing Alzheimer's Disease (AD).

One of the ways in which the risk factor genes for late onset AD can be investigated is by identifying and collecting genetic material from families with multiple members diagnosed with late onset AD (over 60 years of age).

Families meeting the criteria will have any two living family members diagnosed with AD with an onset of age 60 or older and at least one other affected or unaffected relative willing to participate. Families will be evaluated for a medical diagnosis and other factors.

If eligible, blood samples will be collected from the 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 a minimum of 3 members participating in the study: any two living family members diagnosed with AD with an onset at age 60 or older and a third member who must have an age of onset greater than 50, if affected, and 60 or older, if unaffected.

The goal is to recruit 1,000 families in three 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.

Persons interested in registering to participate in this study can call the toll-free NCRAD number 1-800-526-2839 for more information. Local 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. T

The biological samples and data from these families will be available to qualified researchers, who must sign a Materials Transfer Agreement (to protect the privacy rights of participants in this study and to agree to share the results of genetic analyses) before receiving DNA and data.

An oversight committee known as the Cell Bank Advisory Committee (CBAC) and the Coordinator of the NIA Alzheimer's Disease Genetics Study, Richard Mayeux, MD, Columbia University, 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 AD.
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Inclusion Criteria:
  • Two living family members diagnosed with AD with any age of onset
  • At least one other affected or unaffected relative willing to participate

Biological samples available
  • Fresh blood, or
  • 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:
  • Does not meet inclusion criteria
  • Has a known mutation in an early onset AD autosomal dominant gene
  • Member of a family that was included in the National Institute of Mental Health AD Genetics Sib Pair collection

If you are interested and/or qualified please go here for more information.
Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,610 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

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Original content Bob DeMarco, the Alzheimer's Reading Room