Our team follows strict protocols to ensure that your privacy is protected.
To help protect your confidentiality, your paper study records will be stored in a locked cabinet in a locked office. Your electronic study records will be accessible only by a unique username/password given to the study team member. Any report or article that we write will not include information that can directly identify you.
Will you save my samples or research data to use in future research studies?
As part of the study, we may obtain blood samples, demographic information, medical records, and memory testing results from you. We would like to use these results for studies going on right now as well as studies that are conducted in the future. These studies may provide additional information that will be helpful in understanding Alzheimer’s disease, or other diseases or conditions, including research to develop investigational tests, treatments, drugs or devices that are not yet approved by the U.S. Food and Drug Administration.
Blood samples will be collected for genetic research to be checked for amyloid-beta as well as genes that may indicate increased risk for developing Alzheimer’s disease, such as APOE. Samples will be stored indefinitely at Washington University by Dr. Randall Bateman and may be used for future studies of neurodegenerative disorders.
Will my collected samples or research data be shared with other researchers?
We will share your research information including blood samples, demographic information, medical records, and memory testing results with other qualified researchers.
The details in your medical record will be stripped of identifiers (name, date of birth, address, social security number, medical record numbers, and dates of procedures). Only qualified study staff within the Washington University School of Medicine, who agree to keep your data secure, will have access to identifiers when needed. This database will be updated on a periodic basis from your medical records in the following years in order to update your information on medications, surgeries, cognitive testing, disease activity, and disease history. We will store your medical information indefinitely. In the event that the medical record does not contain this information, you may be contacted by study staff to obtain that information directly from you.
