Indiana University LOAD Study
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.
What is the Purpose of This Study?
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 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, AD-FBS is looking for families with living siblings with Alzheimer’s disease. These family members will need to provide a blood sample and medical records.
Getting Started
In order to determine if you are eligible for the NIA-AD FBS study, you will need to complete a few simple steps.
- 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. - 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. - Provide Contact Information
You will be asked to provide information about how we may best contact you.
Telephone Cognitive Assessment for AD-FBS
The goal of AD-FBS is to help researchers identify the genes that contribute to Alzheimer’s disease (AD) and other related dementias. Changes in memory can occur at any time, and in some instances may be an early sign of possible AD. There has been extensive research by many scientists who have sought to study these early memory changes. NCRAD is eager to help scientists who want to better understand the relationship between normal memory changes and those changes that might precede AD or related dementias. It is only through the active participation of families with AD or related dementias that we will be able to unravel the genetics of dementia. AD-FBS is very hopeful that the data we are able to collect through these memory tests will help increase the usefulness of the study samples.
To help scientists perform these studies, AD-FBS coordinators will be contacting family members who are enrolled and have donated blood samples. Due to the large number of families involved with AD-FBS and the time required to complete the memory questions by telephone, we will be sending out notices to families on a rolling basis. So, individuals should not worry if they are not contacted immediately. Also, because this is part of a research study, we will not be able to provide individuals with results concerning their test performance or the performance of other family members.
How to Prepare
We are asking family members who may or may not have some memory difficulty to consider completing these brief memory tests. These questions will typically take about 20-30 minutes to complete, and are best completed when the individual is in a quiet location and will not be disturbed while the questions are being answered. We are able to complete these phone interviews whenever the participant feels at their best; be it morning, afternoon, or evening.
Cognitive Assessment Sections
The AD-FBS cognitive assessment is composed of a few different sections. We first ask a series of short questions to go over medical history and talk about the current and past activities of the participant. We then move into the cognitive portion of the assessment and complete the interview by asking for a family informant who might be willing to answer a couple questions about the participant’s everyday habits.
Contact Us
If you are currently enrolled in the AD-FBS Study at Indiana University and have any questions, or if you would like to call for an update on when your next cognitive assessment will take place, please feel free to contact AD-FBS staff at 1-800-526-2839 or by email at alzstudy@iu.edu. If you are asking for an update, we may ask for your family number and/or your full name so that we may search our database.
Thank you!