DIAN Obs: FAQs
Learn more about the procedures and other participant information.
You will help move research forward. Society may benefit from a better understanding of inherited Alzheimer’s disease and by the development of new diagnostic and treatment procedures for inherited Alzheimer’s disease.
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, researchers may obtain invaluable insight into how and why this disease develops. They also can compare and extrapolate their findings to other forms of Alzheimer’s, including the much more common late-onset disease (sometimes 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 late-onset Alzheimer’s disease.
You will receive a thorough assessment of your memory and general neurological condition. This may find previously unknown medical problems. Should you have memory problems, you and your family may benefit from an increased understanding of your memory disorder.
Commercial professional genetic counseling and clinical genetic testing are offered at no cost to study participants if they choose to make use of these services. This service is not part of the research, and the research team will not know the testing results.
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. This involves a clinical exam and lab tests, memory and thinking tests, collection of blood and cerebral spinal fluid through lumbar puncture, and imaging tests. Participants will undergo these procedures at the time of enrollment and some or all of these procedures every one to four years as follow-up, depending on the participant’s age, the resources available at their site, and the age at which his or her family member began to show signs of Alzheimer’s disease.