Joining the ADRC registry is a great way to help researchers answer complex questions about Alzheimer's disease. The goal of the registry is two-fold. One goal is to keep updated, accurate information on people who are interested in participating in research studies. This allows our group to respond quickly and effectively when a new research study begins enrolling participants at our center. A second goal is to gather comprehensive information on research participants over a long period of time. This information is turned into deidentifed data, combined with other data from across the country, and made available to dementia researchers at other Alzheimer's disease centers and research groups.
Becoming a Registry Participant:
Step 1: Leave a message on our research phone line at 206.764.2069 or 800.317.5382.
Step 2: An ADRC staff member will call you back to ask a series of questions which will help determine whether you are eligible for the registry.
Step 3: If you appear to be eligible for one of our current research studies, we may ask you to sign a medical release form, which we will use to request your medical records for review. If you do not appear to be eligible for our currently ongoing research studies, we will ask you to join a list of people who may be contacted in the future about research projects.
Step 4: Once we have determined that you may be eligible we will schedule you for an initial screening appointment at our center.
Step 5: At your initial appointment, you will find out about the research studies that are currently enrolling participants and whether or not you are eligible for those studies.
Step 6: Stay involved with the registry by coming in for follow-up visits once a year. We may also call you to let you know about new research studies for which you may be eligible.
Snapshot of an Initial ADRC Registry Visit:
After an ADRC staff member has spoken to you and determined you are eligible for a study or the registry, you will be invited to our center. A staff member is available to walk you to the first appointment at your request. One of our research doctors will speak with you about the clinical studies you may be interested in. You will also hear about the possible benefits and risks of participating in research. This appointment might have the feel of a thorough "second opinion" from a dementia expert. It is a chance for you to meet members of the research staff. There will be plenty of time for you to ask questions during your visit. The appointment should last approximately four hours and lunch will be provided upon request.
What happens at a research appointment:
- Signing research consent forms
- Reviewing your medical history with an ADRC clinician
- Memory testing
- Receiving a neurological examination by a dementia expert
- Taking part in a voluntary research blood draw
If you have memory concerns, a research staff person will talk to you about obtaining a Durable Power of Attorney (DPOA) in order to participate. You will come to the appointment with a person who knows you well (your research study companion). This person will be interviewed by an ADRC clinician during your appointment.
If you do not have memory concerns, you may come alone to the appointment or bring a person who knows you well to the appointment (your research study companion). If you bring someone with you to the appointment, this person will be interviewed by an ADRC clinician during your appointment. If you come alone to the appointment, we will conduct a companion interview over the telephone at a later date).