The DIAN Observational (DIAN Obs) study is being conducted at multiple sites around the world — and more sites are in the process of being added as families and health professionals contact us. Currently, the DIAN Obs study is enrolling biological adult children of a parent with a mutated gene known to cause dominantly inherited Alzheimer’s disease. 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 participate in the study. 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 Enroll
1. Review enrollment criteria
- Written informed consent obtained from the participant and collateral source prior to any study-related procedures.
- Participant is 18+ years old and the child of an affected individual (clinically or by testing) in a pedigree with a known mutation for autosomal dominant AD.
- Participant is cognitively normal, very mild, or mildly cognitively impaired (CDR score of 0,0.5, and 1.0).
- Participant has identified two persons (minimum of one) who are not his/her full-blooded siblings and who can serve as collateral sources for the study.
- Participant is fluent in a language approved by the DIAN Obs Coordinating Center at about the 6th grade level (international equivalent) or above.
2. Contact a DIAN Obs participating site
3. Join the DIAN expanded registry
Confidentiality: The DIAN Obs investigators and research team will keep all personally identifying data obtained from DIAN Obs participants confidential. DIAN Obs 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. Data collected or produced during the study will remove any identifying information and be identified by a study code. This data may be shared with qualified researchers who submit requests to use the data in scientific projects, after review and approval by the appropriate DIAN Obs resource committee.
