Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
- The purpose of this mixed-methods interview study was to elucidate how people with mild cognitive impairment and their study partners decide whether to enroll in clinical trials.
- Researchers conducted focus group interviews with five groups of stakeholders to ask about their views on receiving results of an amyloid positron emission tomography (PET) scan.
- GeneMatch is a first trial-independent research enrollment program designed to recruit and refer cognitively healthy adults to Alzheimer’s prevention studies based in part on APOE test results. It enrolls individuals aged 55 to 75 years who live in the United States and self-report not having a diagnosis of cognitive impairment. Participants enroll online and are provided a cheek swab kit for APOE genotyping. Participants are not told their APOE results, though the results may be used in part to...
- This two-page fact sheet developed for the Memory & Aging Project at the Knight Alzheimer’s Disease Research Center (ADRC) describes positron emission tomography (PET) and what happens before and during an appointment for a PET scan. The sheet also provides a link to more information from the Radiological Society of North America.
- This two-page fact sheet explains cerebrospinal fluid collection and potential side effects of lumbar puncture.
- This two-page fact sheet developed for the Memory & Aging Project at the Knight Alzheimer’s Disease Research Center (ADRC) describes magnetic resonance imaging (MRI) and what happens during an appointment. The sheet also addresses potential risks and provides a link to the Radiological Society of North American for more information.
- The 36-second time-lapse video shows the progression of Alzheimer's disease in the brain.
- This video featuring clinicians at the University of Kentucky's Sanders-Brown Center on Aging shows the steps in a lumbar puncture procedure.
- This three-part video series provides background on Alzheimer's disease, what cerebrospinal fluid is, what participants can expect during the collection procedure, and more.
- This short, easy-to-read booklet discusses information on Alzheimer's disease, Alzheimer's genetics, and genes and their role in our health. It also provides evidence-based information on what it means to have a family history of Alzheimer's disease. The information in the booklet is also covered in articles on NIA's website.
- This fact sheet contains information for research participants about biomarkers used in Alzheimer's and dementia detection and research, including brain imaging, cerebrospinal fluid, and blood and genetic tests.
- This study examined whether asking participants to meet biomarker criteria is a barrier to enrollment in Alzheimer’s disease prevention clinical trials. One hundred thirty-two older community volunteers who self-reported normal cognition were provided with one of two theoretical informed consent forms. One form indicated that the results of an amyloid positron emission tomography scan would not be shared with the participants (blinded enrollment). The other consent form stated that only persons...
- This six-panel brochure describes the Successful Aging Program, a longitudinal study on healthy brain aging for adults (ages 65 and older) with normal memory, conducted by the UCI Institute for Memory Impairments and Neurological Disorders (UCI MIND). Participation requires an annual visit, a study partner, procedures (e.g., lumbar puncture), and brain donation upon death. The brochure cover features an Asian couple.
- This two-sided card includes six frequently asked questions about lumbar puncture and a testimonial from a Chinese-American research participant.
- This website provides information about the Harvard Aging Brain Study (HABS) Research Participant Appreciation Day in November 2016.