Volunteering

Thank you for expressing interest in the DIAN study. At present, DIAN is funded to study adult individuals from families in which a specific Alzheimer’s disease mutation has been identified (click here for information about genetic testing). This inherited form of Alzheimer’s disease is a very rare cause of the disorder (less than 1% of all cases). About half of the people in these families carry a mutation and will develop Alzheimer's disease. The onset of symptoms almost always is before age 60.

If you are the child of someone who has/had one of these autosomal dominant Alzheimer’s mutations and are interested in study participation, please contact the study site nearest you (click here for a map of study sites). You do not need to know whether or not you carry the mutation that causes Alzheimer's disease in your family.

If your family does not have Alzheimer's disease caused by a mutation, you may still be eligible to participate in other Alzheimer’s studies. Research opportunities can be found at http://www.clinicaltrials.gov/http://www.alzforum.org/ADEAR, the ADCS, your local research university, or your local chapter of the Alzheimer’s Association.

Potential benefits of participation:

  • 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.

  • 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.

  • 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.

NOTE: 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.