LOAD Informed Consent

We sincerely appreciate your interest in our research. This study is funded by the National Institute on Aging (NIA) to help researchers find genes that increase the risk for Alzheimer’s disease (AD). This webpage will provide you with the information and instructions you will need to determine if this study is right for you and your family. If If you have any questions at any time, feel free to contact us at alzstudy@iu.edu or toll-free at 1-800-526-2839.

Alzheimer's disease is the most common neurodegenerative disorder of the elderly affecting an estimated five million Americans. Genetic factors contribute to the risk for disease with heritability estimates ranging from 57% to 79%. More than a decade ago, the ε4 variant of APOE was identified and remains the most consistently replicated genetic variant influencing the risk of late onset Alzheimer's disease. A segregation analysis suggests there may be four additional genes influencing the age-at-onset of Alzheimer's disease. In 2007 there were 968 association studies in 398 candidate genes reported, but none replicated consistently. There are many reasons for the lack of consistency, but one important reason for the lack of progress is the insufficient number of well characterized families and patients available to the entire scientific community.

Its goal is to identify and recruit families with two or more siblings with the late-onset form of Alzheimer's disease and a cohort of unrelated, non-demented controls similar in age and ethnic background, and to make the samples, the clinical and genotyping data and preliminary analyses available to qualified investigators world-wide. This genotyping represents the largest collection of families ever assembled with Alzheimer's disease combining the NIA-AD FBS Genetics Initiative Multiplex Family Study, the National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD) with additional controls from the University of Kentucky. These genotyping results will serve as a focal point for future research that will identify all of the remaining genetic variants in Alzheimer's disease.

Therefore, LOAD is looking for families with living siblings with Alzheimer’s disease. These family members will need to provide a blood sample and medical records.

In order to determine if you are eligible for the NIA-AD FBS study, you will need to complete a few simple steps.

  1. Screening Questions
    You will be asked a series of questions that will help us to determine if this study is right for you and your family. Depending on your responses to these questions, you may be contacted by a study coordinator from either Indiana University or Columbia University. The responses to the screening questions will allow us to ensure that your family is a right fit for our study. Your personal information will be stored on safe and secure servers and will never be shared.

  2. Agreeing to the Terms of the Study Informed Consent
    If your family qualifies for the study, you will be directed to the NIA-AD FBS Informed Consent. Carefully read the Informed Consent document. At the end of the Informed Consent, you will be asked if you have any questions. If you indicate that you have questions, you will not be able to agree to the terms of the Consent until a Study Coordinator contacts you.

  3. Provide Contact Information
    You will be asked to provide information about how we may best contact you.

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