Participation in ADRC Research and Brain Donation

Volunteering in Research

Our center is looking for a variety of people who are willing to partner with us in Alzheimer's research. The research that happens at the ADRC is entirely dependent upon volunteers who are willing to participate in projects along side us. There are many different levels of participation, from once a year appointment through our research registry to donating spinal fluid through a lumbar puncture, to involvement in current studies and clinical trials of medications and brain donation (see below).

Benefits of volunteering in research:

  • Free yearly follow-up examinations from dementia experts
  • Access to new experimental medication (however, some people may take placebo, an inactive substance, instead of the experimental medications)
  • Treatment recommendations that can be made to your doctor from clinicians at the ADRC
  • Contributing to research efforts that are looking for new treatments and possible preventions for Alzheimer's disease
  • Updates on the latest research efforts on Alzheimer's and other dementias

We are looking to enroll volunteers who have:

  • No memory complaints
  • Some memory concerns or mild cognitive impairment (MCI)
  • A diagnosis of Alzheimer's disease or other diseases that lead to dementia
  • A family history of Alzheimer's or other neurodegenerative disease
  • Veterans with histories of blast or traumatic brain injury from deployment.

In addition to fitting into one of the groups listed above, people who are interested in becoming involved must have a close family member, friend, or neighbor who can answer questions about how the research participant is doing on a day-to-day basis.

 

ADRC Registry

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 for a screening visit. A staff member is available to meet you in the parking lot and walk you to the first appointment at your request. One of our clinicians or researchers 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 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 three and one half hours.

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 an ADRC clinician
  • Taking part in a voluntary research blood draw and sometimes having an EKG

If you have memory concerns, please bring a copy of your Durable Power of Attorney (DPOA) for our records. If you do not already have a DPOA, a research staff person will talk to you about obtaining one so you may participate. You may 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 a person other than your research study companion accompanies you, your study companion will be interviewed at a later time by telephone.

If you do not have memory concerns, you may come alone to the appointment or bring a person who knows you well, who will act as your research study companion. If you bring someone with you to the appointment, this person may 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.

 

Brain Donation

Current ADRC research participants with questions about brain donation, please contact:

Erik Whitaker, ADRC Lead Research Coordinator - Harborview Medical Center

Phone: 206-744-0588 or 855-744-0588 (toll-free) | Email: uwadrc@uw.edu

 

The UW ADRC accepts brain donations from military veterans and currently enrolled ADRC research participants. Brain donation is the most precious and valuable gift that a patient and family can give, with unique benefits. A brain autopsy provides a family with a definitive neuropathological diagnosis of a loved one and an explanation of the symptoms. Importantly, the samples allow researchers to perform analyses that will identify molecular targets for early detection, treatments, and cures.

The UW ADRC Neuropathology Core runs a brain bank with the goal of helping researchers to understand the impact of mild traumatic brain injury (mTBI) on active-duty military members and veterans. Veterans can begin helping now by enrolling today, even though the tissue donation may occur many years from now.

Families and military veterans interested in the Pacific Northwest Brain Donor Network, please contact:

Allison Beller, Research Manager, ADRC Neuropathology Core

Email uwnp@uw.edu

 

If you would like to make a financial gift to help the ADRC sustain this unique brain donor network, please visit our donations page and include a note about your specific interest in the ADRC Neuropathology Core.

 

For members of the public interested in brain donation, please visit the Harvard Brain Tissue Resource.

Website: http://www.brainbank.mclean.org/

Phone 800.BRAIN.BANK (800.272.4622) to learn more about becoming a donor. Any person 18 years of age or older can contact the Harvard Brain Tissue Resource Center (HBTRC).