DIAN Observational Study Procedures
Potential DIAN Observational Study participants will be contacted by telephone to review inclusion and exclusion criteria. Those who are willing to participate and who meet all study criteria will be asked to go to a study site and bring with them another person (someone who knows the participant well and has regular contact) to sign informed consent forms and provide a medical and family history.
Enrolled individuals will participate in the following procedures:
This interview-based assessment, performed by a physician or nurse clinician, focuses on memory and physical health concerns and requires the participation of both the participant and the person who knows the volunteer well. Both are interviewed about the participant’s memory and health, and there is a neurological examination of the participant. The interviews and examination together usually require about 2 hours. The collateral source may be interviewed by telephone if unable to come to the study site.
Memory and thinking tests
The participant is given tests designed to measure different types of memory and other cognitive abilities (approximately 2.5 hours).
Approximately 3 tablespoons of blood are drawn to examine potential biomarkers and for genetic research (approximately 15 minutes).
Cerebral spinal fluid sample testing and banking
Cerebral spinal fluid (CSF) is collected via a lumbar puncture, sometimes known as a spinal tap, which is performed by an experienced physician. By testing CSF, researchers hope to identify chemicals that may change in persons with Alzheimer’s disease. This information may be useful in developing tests to diagnose AD (approximately 2 hours).
Brain magnetic resonance imaging (MRI)
A research MRI brain scan is completed that focuses on measurements of various brain structures and regions involved in memory (approximately 1 hour).
Brain fluorodeoxyglucose positron emission tomography (FDG PET)
PET is a brain scan that studies brain activity using a low level of radiation. A compound called a radio tracer is injected in a vein and allows specialized pictures to be taken (approximately 1.5 hours).
Brain positron emission tomography using Pittsburgh Compound-B (PET-PIB)
This procedure involves a typical PET scan using a compound known as PIB. The PIB is injected before the scan and binds to amyloid in the brain. This may allow investigators to identify those people who have amounts of amyloid build-up that could indicate Alzheimer’s disease (approximately 1.5 hours).
If a participant should die during this study and the individual or their family agree to brain autopsy, the information is of great value to researchers trying to understand Alzheimer’s disease. However, agreeing to autopsy is NOT required for participation in DIAN. Brain donation does not interfere with funeral plans or prevent open-casket funeral.
NOTE: All research data and results are held in strict confidence. DIAN participants are not informed of the results of their tests and procedures.