Dominantly Inherited Alzheimer Network (DIAN) - Observational Study
A Longitudinal Study of Familial, Early-onset Alzheimer’s Disease.
What is the purpose of this study?
The Dominantly Inherited Alzheimer’s Network has been established by the National Institute on Aging of the National Institutes of Health to bring together researchers who study genetic forms of Alzheimer’s disease (AD). The DIAN research volunteers are members of families in which AD is dominantly inherited, meaning that about 50% of the individuals in each generation of a family develop AD, generally before age 60. These rare forms of AD are caused by a mutation in one of 3 genes. All DIAN participants will be members of families with dominantly inherited AD caused by a known mutation.
Research suggests that brain changes may occur years before actual Alzheimer’s symptoms are detected. The major goal of DIAN is to study these changes in people who carry an AD mutation to determine how the disease process develops before there are any symptoms. Ultimately, knowledge gained from DIAN may lead to tests that detect people who are still normal but are at very high risk of developing dementia caused by AD.
Who is eligible?
We are looking for participants who:
have a biological parent or sibling with AD caused by a known mutation
be at least 18 years of age
speak and read English
have someone who knows them well and is willing to answer questions about their memory and thinking
Eligible individuals who volunteer to enroll in DIAN’s studies will contribute to this unique international effort to discover the basic causes of AD. At the same time, they must be highly committed because DIAN asks much from these volunteers in terms of time and testing. It is anticipated that the improved understanding of the AD process will result in better tests to detect AD and eventually lead to therapies to treat or even prevent the illness. However, there can be no guarantees of success in these areas, and almost certainly not within the next few years. DIAN volunteers who donate their valuable time to DIAN may not directly benefit themselves but hopefully will greatly help their children and grandchildren.
What happens during the study?
People from families with a known mutation causing AD are eligible to participate in DIAN and its studies of physical and mental changes that may predict future AD. These studies include:
mental status testing
brain scans, including MRI and PET
blood assays, including genetic studies
assays of cerebrospinal fluid (CSF), obtained by lumbar puncture (spinal tap)
How long is this study?
Study visits are repeated every few years. It is expected that each round of DIAN studies will take about 3 days to complete.
Will I be paid?
All DIAN assessments are for research purposes and are supported by DIAN. Reasonable costs of travel to study visits, accommodations and meals during study participation will also be covered by DIAN. Volunteers will receive payment for some of the study procedures.
Who is sponsoring this study?
The National Institute on Aging of the National Institutes of Health