- Overview
- Finding a Research Study
- Before Participating in a Study
- Research Participant Survey
- Research Participant Study Data
- Concerns or Complaints
Overview
Volunteering to be in a research study is an important decision. Research is the way doctors and scientists learn about new ways to prevent and treat illness in people, and find answers to the many questions about health, disease or human behavior. It is sometimes called “human research” or a “clinical trial.”
There are different ways volunteers participate in research. For example, volunteers may participate by:
- Completing a questionnaire about their health or behaviors, or answering questions in an interview with researchers.
- Donating specimens, such as a tube of blood or a tissue sample.
- Taking part in a clinical research study to find out if new treatments, or new ways of using known treatments, are safe and effective to use in people.
Research may take place in a variety of locations, including a hospital, doctor's office, nursing home, or even a classroom or via an online survey.
Finding a Research Study
These online resources can help you find research studies at UCSF or other institutions.
- UCSF Clinical Trial Finder and UCSF Clinical Trials Overview— Includes info on clinical trials and a searchable database of clinical trials at UCSF.
- UCSF Clinical Research HUB: Resources for Participants – Provides links to clinical trials at UCSF and describes what you should know before joining a study, why clinical trials are important and more.
- ClinicalTrials.gov – A registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
Before Participating in a Study
Before deciding to participate in a research study, please review these helpful materials:
- Information for Prospective Volunteers – Provides information you should consider if you are thinking about being in a research study.
- Questions to Ask the Research Team – Includes common questions you may want to discuss with the researchers.
- UCSF Clinical Research HUB – Provides many resources for individuals who are considering participating in a research study.
Research Participant Survey
If you have participated in research at our facilities, please complete our Research Participant Survey . Your feedback will help us evaluate how effective we are in providing information to our research participants. The survey is completely anonymous.
Research Participant Study Data
In general, release of individual study data and return of results to participants is only permitted when:
- It is a component of the IRB approved research protocol
- Identified in the IRB approved consent form
If a participant requests their individual data or return of results, the IRB may determine that a participant’s request may be accommodated based on:
- Whether the data collection tools are validated
- How the data are planned to be used. The IRB may determine that it is not appropriate to release individual participant data if there is a possibility that the data may be misused (e.g. clinical purposes when not appropriate).
- Evaluating the process for sharing the data. One of the considerations in evaluating whether the process for sharing is appropriate is based on whether the study team involves appropriate research personnel or clinical staff to provide counseling for the participant. The IRB may require that key personnel be added to the study to facilitate the appropriate sharing method.
Under no circumstances will the IRB permit disclosing individual participant data associated with investigational, unvalidated assays as they can be harmful when used to guide clinical decisions.
Concerns or Complaints
If you have concerns or complaints, please follow the steps outlined in the Reporting Research Concerns and Complaints page. The HRPP takes all research concerns and complaints very seriously.