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About the CARE Registry
Who can participate?
To be eligible for CARE, you must be:
- An Asian, Asian American, Native Hawaiian and/or Pacific Islander,
- An adult (18 years old or older,)
- Able to read and speak in English, Mandarin, Cantonese, Korean, Samoan, Vietnamese, or Hindi
- Reside in the United States (U.S.) or US Associated Pacific Islands (USAPI),
- Willing to be contacted to participate in potential future research in Alzheimer’s and related dementias, aging, caregiving and/or other health topics across the lifespan.
Purpose of the CARE registry
- The purpose of the CARE registry is to create a very large repository of people who can be contacted about potential research studies to participate in.
- The health topics will vary and are diverse such as Alzheimer’s disease and related dementias, aging, caregiver-related research, and other health topics across the lifespan for Asian Americans, Native Hawaiian and Pacific Islanders.
How does the registry work?
- If you choose to enroll in this registry, you will complete an online survey.
- This survey will include questions about your socio-demographic background such as age and race, your contact information, health questions such as general health and medical history, whether you are caring for any person(s), and your research participation preferences. It will take you about 15-20 minutes to complete the survey.
Why join a research study?
- Currently, Asian Americans, Native Hawaiian and Pacific Islanders (AANHPI) are among the least represented groups in scientific research.
- To overcome barriers to research participation, our goal is to address the gap and reduce disparities in research participation among AANHPI.
- We aim to give AANHPI a voice and the opportunity to participate in such future research through enrollment in the CARE registry.
Privacy and Confidentiality
- How will my information be used? Researchers will use your information to conduct this study. Once the study is done using your information, we may share it with other researchers so they can use it for other studies in the future. These studies will require approval from CARE and their Institutional Review Board, but will not ask you for additional permission to share this information.
- We will do our best to protect the information we collect from you. Information that identifies you will be kept secure. If this study is published or presented at scientific meetings, names and other information that might identify you will not be used.
The risks of enrolling in the registry
- It is possible that you will receive more contact than you wish or contact about studies that are not of interest to you.
- Many steps have been taken by UCSF researchers to protect the confidentiality of registrants, however, there is a risk any time you provide information about yourself, even just your name, that your confidentiality will be lost.
- It is possible that you will never be contacted about participating in a study.
Are there any payments or costs?
- In return for your time and effort, you will be provided a $10 gift card by the study team.
Who can answer my questions about CARE?
- If you have questions about the registry, please see the frequently asked questions (FAQ) section below or e-mail [email protected].
- If you would like to speak to someone to get an answer to your questions, please contact the CARE study staff at (669) 256-2609 or the appropriate local contacts:
- CARE Principal Investigator, UCSF, Dr. Van Ta Park at (415) 514-3318 or [email protected]
- UCD, Dr. Oanh Meyer, (916) 734-5218 or [email protected]
- UCI, Dr. Joshua Grill, (949) 824-5905 or [email protected]
- NAPCA, David L. Kim, (206) 624-1221, or [email protected]
- ICAN, Quyen Vuong, (408) 509-8788 or [email protected]
Frequently Asked Questions
Who is paying for CARE?
- The CARE research project is supported by the National Institute on Aging of the National Institutes of Health under Award Number R24AG063718.
- The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
How many people will participate in the CARE registry?
- About 10,000 people will participate in this registry.
How do I enroll?
- Click the link here to enroll!
How can I help or volunteer for CARE?
- Thank you for your interest and willingness to help promote CARE! Please share CARE via Twitter, Facebook, LinkedIn, or YouTube!
- Contact CARE ([email protected] or 669-256-2609) if you would like to do more in promoting CARE and helping Asian Americans, Native Hawaiian and Pacific Islanders to have a voice in research!
What is Alzheimer’s disease and related dementias (ADRD)?
- According to the Alzheimer’s Association, Alzheimer’s disease (AD) is a degenerative brain disease and the most common form of dementia.
- Dementia, a general term for a decline in mental ability severe enough to interfere with daily life, is a debilitating and burdensome disease. Dementia is not a specific disease. It's an overall term that describes a group of symptoms. Memory loss is an example.
What is mild cognitive impairment (MCI)?
- MCI causes a slight but noticeable and measurable decline in cognitive abilities, including memory and thinking skills. A person with MCI is at an increased risk of developing Alzheimer's or another dementia.
- Mild cognitive impairment causes cognitive changes that are serious enough to be noticed to the person affected and to family members and friends, but do not affect the individual’s ability to carry out everyday activities.
- Approximately 15 to 20 percent of people age 65 or older have MCI.
Why ADRD research is important?
- AD is the 4th leading cause of death in CA (vs. 6th in the U.S.)
- No. of Americans living with ADRD is expected to increase from 5.7M to 14M by 2050
- Reference: Alzheimer’s Association. (2018). Alzheimer’s Disease Facts and Figures. https://www.alz.org/media/homeoffice/facts%20and%20figures/facts-and-figures.pdf
What are examples of research studies that you may be contacted to participate in?
- Some examples of potential research studies that CARE registry participants may get contacted about include but are not limited to the prevention, intervention, and treatment of cognitive decline, Alzheimer’s disease and related dementias; other aging-related health concerns including health issues and risk and protective factors that begin in early to mid-life; and, the health and wellness of caregivers.
- Examples of questions that research may help answer:
- How much physical activity do Asian Americans, Native American and Pacific Islanders need to do to help prevent memory loss in their lifetime?
- How do family members take care of their loved ones who have memory loss or disability?
- What kinds of resources do caregivers need to stay healthy themselves?