UCLA launches novel matching program for HIV/AIDS study volunteers
There has been substantial progress over the years in the fight against AIDS, and the key has been the development of medications and other therapies that control HIV and treat many of the complications of AIDS.
Also important in this fight are behavioral studies and surveys examining various aspects of the disease, laboratory studies to better understand how HIV causes disease, and clinical trials of new therapies to treat HIV and its complications. For these studies, researchers rely on people willing to help with research and to test the efficacy of new treatment and prevention approaches. However, it is often difficult to recruit study volunteers in a timely fashion. To fill that gap, the UCLA Center for AIDS Research (CFAR)/AIDS Institute has initiated the HIV Research Study Volunteer Project - RSVP for short.
RSVP matches volunteers with studies in which they might be eligible to take part. In addition to linking potential volunteers to appropriate studies, RSVP allows investigators to quickly enroll people in their studies and move forward with their investigations.
"One good way to describe RSVP is as a clinical trial and research dating service - like Match.com for research," said Faith Landsman, director of RSVP. "We are accepting HIV-positive and HIV-negative men, women and transgenders who are interested in learning more about HIV research at UCLA."
Anyone over age 18 can enroll online at www.hivrsvp.ucla.edu. Volunteers must be able to make their own medical and legal decisions rather than having someone else, such as a conservator, do so, and they should be willing to be contacted about upcoming research trials.
Once volunteers choose to enroll, they will be asked to fill out a detailed questionnaire. They can do so either online or by mail. Volunteers will be asked to provide personally identifiable information (PII) that includes their name, age, date of birth, email address and telephone
number. They'll also be asked for the following non-personally identifiable information (non-PII): race/ethnicity, gender, HIV status, the antiretroviral drugs they are taking if they are HIV-positive, and any other health conditions they may have. They may also specify the type of research they are interested in and how they wish to be contacted about possible research studies.
"The more information the volunteer fills out, the more accurately we'll be able to match them with the appropriate studies," Landsman said.
The volunteer's PII and non-PII information will be kept in separate databases, both of which are very secure and built by the UCLA Computing Technologies Research Lab. The information will be available only to RSVP personnel and will be used only for purposes of matching potential volunteers to studies.
Investigators who launch a study will complete an RSVP request that includes the subject criteria they seek. RSVP staff will search the database for potential volunteers meeting those standards and will then contact them via telephone, email or postal service, as specified by the individual. Only RSVP staff will contact a volunteer.
Volunteers will be supplied with a short description of the research study and provided with information about how to make contact with the research team if they could be interested in participating in the study. None of the emailed or mailed communications will include the term "HIV."
Once the volunteers have been contacted and supplied with the relevant information, they can choose whether or not to participate, and it is up to them to then make contact with the specific study program. Those who decide to take part must contact the investigator directly, so the volunteer remains in control over which studies they are a part of.
Volunteers can at any time ask to be removed from RSVP. Once they do so, all of their information will be permanently removed from the database and destroyed.
UCLA CFAR/AIDS Institute, established in 1992, is a multidisciplinary program drawing on the skills of top-flight researchers in the worldwide fight against the human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS), the first cases of which were reported in 1981 by UCLA physicians. Institute members include researchers in virology and immunology, genetics, cancer, neurology, ophthalmology, epidemiology, social science, public health, nursing and disease prevention. Their findings have led to advances in treating HIV as well as other diseases such as hepatitis B and C, influenza and cancer.