Frequently Asked Questions
General Questions
Why is this study being done?
The purpose of this study is to create a large repository of people who can be contacted about Alzheimer’s disease and related dementias, aging, caregiver-related research, and other health topics across the lifespan being performed at UCSF, UCD, UCI, UH, CSUEB or ICAN and other institutions/organizations with Institutional Review Board approvals for research with Asian American, Native Hawaiian and Pacific Islander (AANHPI) populations. The National Institute of Health is paying for this research.
Who can participate in CARE?
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 one of the following languages: English, Cantonese, Mandarin, Hawaiian, Hindi, Ilokano, Japanese, Korean, Samoan, Tagalog, or Vietnamese
- Reside in the United States (US) or US Associated Pacific Islands (USAPI)
- Willing to be contacted to participate in health research
Why should I join a research study?
Currently, Asian American, Native Hawaiian and Pacific Islander (AANHPI) populations are among the least represented groups in scientific research.
To overcome barriers to research participation, our goal is to improve research participation and reduce health disparities on Alzheimer's disease, aging, caregiving, and other health issues in AANHPI communities. Join research studies to give AANHPI populations a voice and the opportunity to participate in such future research through enrollment in the CARE registry.
Some examples of potential research studies that CARE registry participants may get contacted about include — but are not limited to:
- Prevention, intervention, and treatment of cognitive decline
- Alzheimer’s disease and related dementias
- Health issues and risk and protective factors that begin in early to mid-life
- Health and wellness of caregivers
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 Numbers R24AG063718 and R01AG083926.
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 take part in this study?
Over 10,000 AANHPI adults have participated in the CARE Registry as of May 2023. We are aiming to enroll 10,000 more people into this registry.
Who can answer my questions about CARE?
If you have questions about the registry, please contact us through our contact form or e-mail us directly at [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:
- 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]
- ICAN, Quyen Vuong, (408) 509-8788 or [email protected]
If you wish to ask questions about the study or your rights as a research participant to someone other than the researchers or if you wish to voice any problems or concerns you may have about the study, please call the UCSF Institutional Review Board at (415) 476-1814.
Procedure Related Questions
How do I enroll in CARE?
You can enroll in CARE online or by phone by calling (669) 256-2609.
What will happen if I take part in this research study?
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 and willingness.
How long will I be in the study?
It will take you about 20-30 minutes to complete the registry enrollment survey. We will contact you every year to invite your continued participation in this program.
Can I stop being in the study?
Yes, you do not have to complete the survey for enrolling in the CARE Registry. If you choose not to enroll in this registry, you will not lose any of your regular benefits, and you can still receive medical care as usual. Just tell the study researcher or staff person right away if you wish to stop being in the study.
If you withdraw from the study, any data we have already collected from you will remain part of the study records. You must tell the study team you do not want this information to be collected when you withdraw, otherwise it will be collected.
Also, the study researcher may stop you from taking part in this study at any time if they believe it is in your best interest, if you do not follow the study rules, or if the study is stopped.
What side effects or risks can I expect from being in the study?
We will be asking you some questions about your background and health status. By answering these questions, it will help us in connecting researchers to potential participants that they are looking for or need for their studies. Some of the survey questions may make you feel uncomfortable or raise unpleasant memories. We encourage you to answer as many questions as possible. You can choose not to complete the survey for enrolling in the CARE registry.
Are there benefits to taking part in the study?
There will be no direct benefit to you from participating in this study. The enrollment information will be used for research. CARE registry participants may help to increase research representation of Asian American, Native Hawaiian and Pacific Islander populations, who are currently underrepresented in research. Your participation in CARE may help researchers and health professionals to better understand the needs of and provide services for Asian American, Native Hawaiian and Pacific Islander communities.
What other choices do I have if I do not take part in this study?
You are free to choose not to participate in the study. If you decide not to take part in this study, there will be no penalty to you. You will not lose any of your regular benefits, and you can still get your care from our institution the way you usually do.
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 use the remaining information collected for future research studies or share them with other researchers so they can use them for other studies in the future. We will not share your name or any other personal information. We cannot guarantee that this will prevent future researchers from determining who you are. We will not ask you for additional permission to share this de-identified information.
If you are potentially eligible for a study that wishes to recruit participants from CARE, we will give them your name, preferred contact information (email address, phone number, mailing address or all of the above) and preferred language. We will not share your information if you do not meet the eligibility criteria for the study. For example, if a study is hoping to recruit Chinese Americans who are over 50 years of age, smokes cigarettes, and lives in the Sacramento area, CARE will only give the researcher your name, preferred contact information, and preferred language. The requesting research study will need to have received approval from the Institutional Review Board.
Will information about me be kept private?
We will do our best to make sure that the personal information gathered for this study is kept private. However, we cannot guarantee total privacy. Your personal information may be given out if required by law. If information from this study is published or presented at scientific meetings, your name and other personal information will not be used.
Authorized representatives from the following organizations may review your research data for the purpose of monitoring or managing the conduct of this study:
- Representatives of the National Institutes of Health
- Representatives of the University of California
- Representatives of the University of Hawai‘i
- Representatives of the California State University, East Bay
- Representatives of the International Children Assistance Network
Are there any costs to me for taking part in this study?
No. The sponsor has agreed to pay for all items associated with this research study; you or your insurer will not be billed.
Will I be paid for taking part in this study?
In return for your time and effort, you will be provided a one-time, $10 Amazon or Target gift card by the study team. Fraudulent responses would not be considered, and no payment would be issued.