Volunteers

The UCLA-CDU Center for AIDS Research (CFAR) HIV Research Study Volunteer Project (RSVP) is a National Institutes of Health (NIH) funded program that matches people with and without HIV with HIV-related research at UCLA and Charles Drew University (CDU). We want everyone in Los Angeles who is interested in research studies to be able to find one that fits their needs.

About Participating

Volunteers are the heart of research at UCLA. Without you, we would have extremely limited research. Everyone has a different reason for volunteering. Whether it is to help future generations, to give back, or to be on the cutting edge of science, we are so grateful for all of the volunteers that help us with our work.

Enroll as a Volunteer

The RSVP database is a secure, password protected database that matches people who are interested in participating in research studies with appropriate studies. Research studies usually have rules about who can and cannot participate.  These are called inclusion and exclusion criteria. If you enroll in RSVP, we will ask you to answer some questions about your health history and some contact information. These questions are designed to help us match you with studies that are appropriate for you. You may choose to fill out as much or as little information as you wish.  The more information you fill out, however, the more accurate your matches will be.

While you will not be compensated for enrolling in RSVP, each study that you are contacted about will have its own rules about whether there is compensation or not.  You must contact the study coordinator after you are matched to find out more about compensation.

Joining RSVP does not automatically enter you into any research studies. Once you sign up for RSVP, you will be contacted if you might be eligible for a study. It will always be your choice to speak with the research team or not to see if you are eligible through a more thorough screening.

Participant Resources

Search for Research Studies

Another way you can learn more about research studies at UCLA and CDU is by going to the UCLA CARE Center Clinical Trials website or CDU Drew CARES website. Many, but not all studies focused on HIV (treatment, prevention, and more) are listed there, including the contact information for each study. The UCLA Health clinical trials website has a search tool for all clinical trials being conducted at UCLA, including studies that are not focused on HIV. Clinicaltrials.gov is a database of all clinical trials that are occurring in the United States. You can search this database for trials that might interest you.

Privacy and Confidentiality

It is a privilege to involve people in research. UCLA and CDU take this privilege very seriously. Federal regulations, state laws and University of California and CDU policies require that UCLA and CDU protect the rights and welfare of research participants. Everyone at UCLA and CDU is responsible for following these requirements. Every participant receives the same high level of protection. This is true no matter who pays for the research or where the research actually takes place. Your privacy and confidentiality is very important to us. If you are concerned about your privacy or confidentiality, please contact us for more information.

Frequently Asked Questions

What is research?
Research is the scientific search for knowledge. In science, we look at the information we collect during research to improve what we know about something. If we are looking at medications, we learn if the medication is safe and effective by doing research. All new medicines must to go through clinical research in order to be available to the public.

 

What are the different types of research?
A clinical trial is a type of research that is looking at medications, combinations of drugs, surgical approaches or devices. In a clinical trial, the investigator is looking at the safety and effectiveness of either the drug or a device.
Prevention trials look for better ways to prevent diseases in people who do not have the disease or to prevent a disease from returning. In prevention trials, there may be medicines, vitamins, vaccines or lifestyle changes.
Diagnostic trials are done to find better tests for diagnosing diseases.
Laboratory research involves only blood draws so that researchers can test your blood in the laboratory but there are no interventions.
Surveys or questionnaires may be part of research or they may be the entire research. A researcher will often want to ask people questions to learn about their behavior, how they feel emotionally or learn what they think about a certain disease or medication.

 

Why is research important?
If not for research, we would not have the medicines currently used to treat different diseases. We would also not know which interventions help people more in preventing the spread of sexually transmitted infections or taking their medicines regularly. A lot of research just doesn’t happen because there aren’t enough volunteers. The information scientists learn from research helps to improve medical care for future patients.

 

Why do researchers need volunteers?
Scientists can’t come up with vaccines for HIV, test new drugs against old ones to see which is better, find new treatments or learn about behaviors without research. Research cannot be done without research volunteers.

 

Why should I volunteer for research?
There are lots of reasons to volunteer for research. Every person who has volunteered for a study has a different reason for volunteering. Some people say that they volunteer because they want to be on the cutting edge of new discoveries. Others volunteer because a friend or family member has a disease that needs new treatments and they want to be able to help. Some people volunteer because they want to help future generations. Your reason for volunteering might be different. Whatever your reason for volunteering is, we are lucky to have you.

 

Are there risks or benefits of participating in a study?
Every study is different and every study will have different risks and benefits. If you are interested in a study, you can contact the study coordinator and talk to him or her about the risks and benefits before you agree to participate.

 

What happens if I decide to enroll in research?
If you decide to enroll in a research study, it will depend on the type of research that is being done, what happens to you during the study. For instance, if the study is a clinical trial, you might have blood drawn, you might take medicines, you might be asked questions or you could have x-rays. You will learn all about the procedures or what will happen in the research before you give your permission by signing a consent form. You can also ask questions about anything you do not understand before you make a decision about whether or not you want to participate.

 

What if I don’t have HIV?
We are looking for people who don’t have HIV as well as people who do. We may have a trial of something to prevent HIV or a questionnaire for people who don’t have HIV, so we welcome your participation!

 

Why is research important in diverse communities?
A lack of diversity in research studies including clinical trials, which tend to enroll fewer children, women, minorities and older individuals, hurts every community. If a group is missing from the research, then the outcomes ignore biological differences that cause people of varying ages, genders and ethnicities to react differently to the therapies or interventions. Additionally, lack of diversity in research can contribute to stereotyping and disparities in healthcare.

 

Why does the RSVP survey ask so many questions?
The questions on the survey are designed to match you to research volunteer opportunities. The more questions you answer, the more closely we can match you to a research study. You can choose to answer as many or as few questions as you want.

 

Am I required to sign up for a study if I enroll in RSVP?
There is no obligation to participate in any study if you sign up for RSVP. You may be matched with and contacted about studies and you can, at any time, tell the study coordinator that you are not interested in participating.

 

If I choose email as the way I would prefer to be contacted, what will I receive?
If email is your contact preference, whenever we email you, we will use the email address rsvp@mednet.ucla.edu. In the subject line of the email it will always say “RSVP”. There will never be a mention of HIV in the email body or subject line. The body of the email will say, “This is a contact from RSVP. We have found a research match that you may be interested in. For more information on this study, please contact [study coordinator’s name] at [study coordinator’s phone number]. You may also view information about the study, such as a flyer, using this link: [RSVP web address]. If you have any questions about the RSVP program, please feel free to email us at rsvp@mednet.ucla.edu or call us at 310-843-2015.” The flyer may have HIV related information in it, depending on the study. Please note that if you choose to communicate with RSVP staff by email, you should not include any sensitive health information, as the confidentiality of emails cannot be guaranteed.

 

Are there risks of participating in RSVP?
There could be a potential loss of confidentiality of the information you provide to us, however, we have safeguards in place to try to make sure that your information is kept confidential.

 

Are there benefits to participating in RSVP?
The benefit of participating in RSVP is that you may be more informed about the research occurring at UCLA and CDU. You may also have an earlier opportunity to enroll in the research if you wish.

 

What if I want to stop participating in RSVP?
If you want to stop participating in RSVP, we may ask you some questions about the reasons you stopped participating, but you can cancel your participation at any time, with no penalty.

 

Who can I contact for more information?
If you are interested in more information about RSVP, please call us at 310-843-2015. You can also email the program at rsvp@mednet.ucla.edu. Please note that if you choose to respond by email, you should not include any sensitive health information, as the confidentiality of emails cannot be guaranteed.

 

 

If you have concerns about this program or any studies that you want to talk about with someone other than program staff, you may contact the UCLA Institutional Review Board at (310) 206-2040.