Explain Procedures & Results

Research participants who intend to donate their brains to a study on Alzheimer’s and related diseases are reliant on family members to fulfill the donation plan. Thus, family members play a pivotal role in increasing brain donation rates, particularly among underrepresented groups. In this study, researchers conducted focus groups with a total of 15 Latino adults who each has a parent age 65 or over. Analysis of the discussions support inclusion of family members during all stages of the...

People with Alzheimer’s disease are vulnerable to therapeutic misconception, particularly, the conflation of routine clinical care and scientific research. This misconception can compromise the informed consent process by causing prospective participants to underappreciate the level of risk involved in trial participation. The authors advocate for a more comprehensive informed consent process that accounts for the uniqueness of Alzheimer’s disease, creates a more productive and clear...

The Michael J. Fox Foundation, which focuses on elimination of Parkinson’s disease, has developed study recruitment materials that are applicable to other areas of disease research.

Guidance documents for returning individual and aggregate clinical trial results to participants were developed by the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard to support the goal of greater transparency in clinical research.

The Patient-Centered Outcomes Research Institute (PCORI) created this repository of more than 150 tools and resources for use with patient-centered, stakeholder-engaged research. Repository items are developed by recipients of PCORI research grants, and the Institute makes them publicly available to encourage the use of these engagement practices and methodologies within the broader healthcare research community. The database can be searched by keywords or by criteria in the following categories...

This web page of the Indiana Alzheimer Disease Center answers questions about its brain donation program.

The NIH website, NIH Clinical Trials and You, contains several pages for researchers and trial sites: Improving Visibility of NIH-Supported Clinical Trial Activities and Results: Describes the NIH policy, similar to the FDA “Final Rule” reporting requirement for funded clinical trials: Trials must be registered at ClinicalTrials.gov, and summary results must be submitted no later than 1 year after the primary completion date. Clearly Communicating Research Results Across the Clinical Trials...

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.

More than 25 plain-language informational brochures in English have been developed to enable and improve communication between clinical research staff and research participants. Most of the brochures are available in an additional 15 languages.

This toolkit provides primary care providers with the tools necessary to recognize normal cognition, diagnose Alzheimer's disease, and identify other cognitive problems requiring specialty referral.

A one-page handout from the Stanford Alzheimer's Disease Research Center explains brain donation in simple steps.

A six-panel brochure from the Stanford Alzheimer's Disease Research Center uses a frequently asked questions format to provide information on brain donation.

A two-sided informational card that provides seven frequently asked questions about brain donation and a testimonial from a Chinese-American study partner.

Public-directed page of the NIH NeuroBioBank providing information on donation and answering frequently asked questions.

This trifold brochure created by the Johns Hopkins Alzheimer’s Disease Research Center provides information on the Memory and Aging Study Brain Donation Program and the importance of donation. The brochure includes information on making the decision, joining the program, and making arrangements. It also features participant profiles and provides contact information.

The Sanders-Brown Center on Aging at the University of Kentucky created a trifold brochure for a brain donation program related to the Down Syndrome—Aging & Alzheimer's Disease Study. The brochure includes information on why brain donation is important, whether donation will affect funeral arrangements, the purpose of the study, what's involved in autopsy, and who can donate. It also includes contact information.

The Rapid Diagnostic Clinic, part of the Center for Brain/Mind Medicine at Brigham and Women’s Hospital, provides access to earlier diagnosis for patients interested in research participation at the Center for Alzheimer Research and Treatment (CART) and supports physician partners whose patients are in need of diagnostic assistance. Two-sided flyers provide information for providers and patients, respectively.

This study qualitatively examined perceptions of advanced stage lung cancer patients participating in a lung cancer Rapid Tissue Donation Program and their next of kin and physicians. Through interviews, the authors found that the majority of patients joined the program to give back to research. Patients also discussed their decision to participate with family members and desire for family to receive information about the use of the tissue after their death. All participating next of kin were...

The Wisconsin Registry for Alzheimer's Prevention is a longitudinal observational cohort study enriched with people with a parental history of probable Alzheimer's dementia. Since late 2001, this registry has enrolled 1,561 people at a mean age of 54 years. Participants return for a second visit 4 years after baseline, then every 2 years. Eighty-one percent of participants remain active in the study after 9 years of follow-up. Assessments of cognition, self-reported medical and lifestyle...

The Harvard Brain Tissue Resource Center created a four-page brochure focused on different religious perspectives of tissue donation and postmortem human brain research. The brochure seeks to address the question that many potential donors have: Is the decision to support essential research by donating brain tissue after death compatible with my religious beliefs? The information covers Protestantism, Catholicism, Judaism, Greek Orthodox, Islam, Buddhism, Hinduism, Jehovah's Witness, and...

This handout, created by Dementia Australia, provides information to help people make a decision about donating their brain or a loved one’s brain for research and how to go about it. The handout features a series of frequently asked questions covering what brain donation is, how to become a donor, and the process of donation.

Strengthening Translational Research in Diverse Enrollment (STRIDE) is a collaborative project focused on developing innovative approaches to enhancing informed consent procedures, with a goal of improving research literacy among underserved populations.

The Dementia and the Brain section of the UCSF Memory and Aging Center website provides an overview on dementia, causes, types, treatment, and links to more resources, including a A Patient's Guide to Dementia. Subpages go more in-depth on tests for dementia, medications, surgery and hospitalization, genetics, healthy aging, memory, behavior, and function. The section also includes a list of medical terms and definitions.

This one-page fact sheet developed for the Memory & Aging Project at the Knight Alzheimer’s Disease Research Center (ADRC) describes psychometric testing and the purpose of testing. The sheet also addresses the question of whether results will be shared.

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 sleep monitoring and the devices used in the sleep study: Actiwatch, Sleep Profiler, and Alice PDX. The sheet also addresses the question of whether participants will see their results.

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.

"Evaluation and Reporting of Age-, Race-, and Ethnicity-Specific Data in Medical Device Clinical Studies" is a 36-page document, issued in 2017, that provides guidance for industry and Food & Drug Administration (FDA) staff outlining the FDA’s data-reporting expectations and recommendations for the evaluation and reporting of age-, race-, and ethnicity-specific data in medical device clinical studies. The primary intent of these recommendations is to improve the quality, consistency, and...

This NIA video series covers topics about participating in Alzheimer's disease research.

The National Disease Research Interchange (NDRI) Brain Tissue Programs four-page, full-color brochure provides information about organ and tissue donation for research.

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.

The Memory & Aging Project (MAP) at Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis was started in 1979 and studies intellectual functioning in persons as they age. The ADRC has a number of materials promoting this study, including: A full-color folded brochure that provides an introduction to MAP and the Knight ADRC and covers what to consider before volunteering. The brochure also includes an infographic about the ADRC and contact information. A...

The Penn Memory Center has created Web pages describing its open studies. Each page provides a link to a printable PDF with the same information: Aging Brain Cohort (ABC) Study Alzheimer’s Disease Neuroimaging Initiative 3 Study Longitudinal Early-onset Alzheimer’s Disease Study (LEADS) Medial Temporal Lobe (MTL) Study The PEGASUS Study REVEAL-SCAN Study Time Out Respite Care Research Study

“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 one-page, full-color flyer describes the importance of brain autopsy to research and the special need for brain donations from people who are African American. Several bullet points summarize the donation process, and a paragraph answers the question, “Does donation fit in with religious beliefs?” Contact information is provided.

Two videos from the Wisconsin Alzheimer’s Disease Research Center promote brain donation.

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...

This eight-page brochure from the Wisconsin Alzheimer's Disease Research Center encourages people to volunteer with the center's brain donation program.

This online web portal from the National Institutes of Health (NIH), includes information for the public on participating in a clinical trial. The portal includes information for parents and family members, basic information on clinical trials, and personal stories from trials participants.

The All of Us Research Program has many resources, such as videos, social media postings, and websites.

A one-page handout from the Rush Alzheimer’s Disease Center provides information for participants to share with family members about their participation in the Minority Aging Research Study (MARS) Organ Donation Program. The handout includes information on MARS, which is open to African Americans 65 years old or older; why donation is important; what to do at the time of death; and the process, including transportation, what will be removed, length of the procedure, and the follow-up report that...

A three-page handout developed for the Latino CORE Study at the Rush Alzheimer’s Disease Center includes 16 frequently asked questions related to donation. The series of questions covers the process and benefits of brain donation for helping scientists learn about changes in the brain, spinal cord, and nerve and muscle tissue in order to better treat and prevent memory loss and dementia in future generations.

This NIA booklet provides tips for healthcare professionals to communicate effectively with older patients.

This booklet, developed by the National Institute on Aging and the National Institute of Neurological Disorders and Stroke, provides an overview of research on Alzheimer's, vascular dementia, mixed dementia, frontotemporal disorders, Lewy body dementia, and more. The information in this booklet is also available online on the NIA website.

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 toolkit, available in English, Spanish, and Chinese, supports presentations to encourage older adults and their family caregivers, including underrepresented populations, to consider participating in research. The toolkit includes a presentation PowerPoint (in long and short versions) which focuses on Alzheimer’s and dementia research and can be delivered by healthcare professionals, aging services providers, community leaders, and others. It also includes a user guide, flyer, and fact...

This online article is designed as a guide to support healthcare professionals in managing older patients with cognitive impairment or dementia, suggests care strategies following patients' diagnostic evaluation. The article discusses developing management and patient support plans, tips for communicating with the patient and caregiver, ways to discuss clinical trials, and resources for patients and professionals to learn more.