Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
- Resources from the Wisconsin Alzheimer’s Disease Research Center to help inform and recruit American Indian veterans into clinical trials.
- This video explains how participants in LEADS, an NIA-funded study, can choose whether or not to receive genetic results and what these results mean.
- The Vanderbilt Memory and Alzheimer's Center offers information about joining research studies and brain and tissue donation.
- This web page of the Indiana Alzheimer Disease Center answers questions about its brain donation program.
- The homepage of the Indiana Alzheimer Disease Center provides one-page online referral forms that patients or their clinicians can use, respectively, as a first step in volunteering for research on Alzheimer’s disease and other dementias.
- This paper describes the design and development of a tablet-based decision support tool to enhance shared decision making and decisional capacity for people with a genetic condition that causes development problems and cognitive impairment who are participating in the informed consent process.
- The website of the University of Kansas (KU) Alzheimer’s Disease Center includes an iframe, “Currently Enrolling Alzheimer’s Disease Studies,” which lists basic information about currently recruiting studies and gives contact information (phone number, website) for consumers and medical providers if they are interested in following up. Studies are categorized (e.g., observational studies, prevention studies, treatment studies). Each description includes the study’s title, type of study...
- This webinar series covers regulatory documentation for clinical trials, informed consent, good clinical practice, and many other topics.
- The Penn Memory Center uses a Google Form for enlisting into its Brain Health Research Registry people age 60 and older and who have normal memory, mild cognitive impairment, or Alzheimer’s disease. Registry participants are contacted periodically with a list of research studies they can consider joining.
- “Take a Closer Look” is a 12-page guide for participants in the REVEAL-SCAN Study and their study partners. Topics covered are Alzheimer’s disease dementia, amyloid, study steps and procedures including cheek swab and PET scan, and benefits and risks for participants. A one-page flyer on the SCAN study is also available.
- This randomized controlled trial tested whether a memory and organizational aid, the MacArthur Competence Assessment Tool, improves Alzheimer’s disease patient performance on measures of capacity and competency to give informed consent. Eighty patients with very mild to early moderate Alzheimer’s disease and 30 cognitively normal older adults were recruited from an NIA-funded Alzheimer's Disease Center using the center's patient database. Based on expert reviews of the interview transcripts, the...
- Registry participants receive an information packet including contact information for Michigan Alzheimer’s Disease Research Center (MADRC) staff, brochures on relevant clinical services and education/wellness programs, and a list of currently recruiting studies. Appreciation for volunteers’ commitment is shown through birthday cards, holiday cards, and an annual gift to promote brain/physical health, such as a pedometer.
- The Brain Autopsy and Donation Program in the Michigan Brain Bank (MBB) provides individuals and families an opportunity to contribute to research. Participants are eligible if they are enrolled in an affiliated study or were seen by a neurologist at the University of Michigan. Information packets consist of a brochure, a booklet explaining the brain autopsy program, a wallet-sized information card, and refrigerator magnet. When the participant dies, the next-of-kin is sent a pathology report...