Frequently Asked Questions (FAQ)
What is dominantly inherited Alzheimer’s disease?
Dominantly inherited Alzheimer’s disease is caused by rare inherited gene mutations. A person born with the mutation not only develops Alzheimer’s disease before the age of 60, but has a 50–50 chance of passing the gene along to each of his or her children (click here for information about genetic testing). When Alzheimer's disease is caused by a mutation, about 50% of the people in the family tree get the illness before age 60.
Why are the DIAN study and its volunteers so important?
Dominantly inherited Alzheimer’s disease—identifiable through genetic testing—develops in a pattern resembling the far more familiar late-onset form. By observing the complex interrelated biological changes that occur in gene carriers well before symptoms appear, scientists will obtain invaluable insight into how and why the disease develops, and can compare and extrapolate their findings to the much more common late-onset disease (often called “sporadic” Alzheimer’s disease because it often develops without a clear family history of the disorder).
The study requires a large number of qualified study participants, both gene carriers and non-carriers, so that comprehensive research studies can be conducted and data accurately compared with the far more common late onset Alzheimer's disease (click here for information about genetic testing).
What is the study’s goal?
Research suggests that certain brain changes occur years before actual Alzheimer’s symptoms are detected. One goal of DIAN is to study these possible changes in people who carry an Alzheimer’s disease mutation. Other family members without a mutation will serve as a comparison group. Another goal of DIAN is to establish a research database and tissue repository to support research on Alzheimer's disease by other investigators around the world.
How will DIAN accomplish this goal?
People in families in which a mutation has been identified will be tracked in order to detect physical or mental changes that might distinguish people who inherited the mutation from those who did not. A list of procedures that participants may be involved in can be viewed by clicking HERE. Participants will have the procedures at the time of enrollment into DIAN and thereafter every one to three years, depending on the participant’s age and the age at which his or her family member began to show signs of Alzheimer’s disease. More information can be obtained by contacting one of the DIAN performance sites.