DIAN Observational Study Participation

The Observational Study is being conducted in multiple sites around the world — and more sites are in the process of being added as families and health professionals contact us. Currently, we are enrolling biological adult children of a parent with a mutated gene known to cause dominantly inherited Alzheimer’s disease in the Observational Study. These individuals may or may not carry the gene themselves and may or may not have disease symptoms. Prospective participants do not need to know whether they carry the gene to volunteer. However, if an enrolled participant wishes to learn his or her genetic status, the study provides clinical genetic counseling and testing at no cost.

How to participate

There are two ways to participate:

Why participate?

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, scientists will 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.

Learn more about genetic counseling »

What’s involved in participation?

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, and imaging tests. Participants will undergo these procedures at the time of enrollment 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.

Confidentiality

The DIAN investigators and research team will keep all research data obtained from DIAN participants confidential. DIAN participants themselves are not told about their research results, nor are the results provided to their primary physicians. It is necessary to carefully safeguard the data to minimize unintended consequences of disclosure for employment, insurability, and other considerations.