For Patients & Participants

Participating in Research

What to consider before agreeing to take part in a research study, and resources to help you make an informed decision.

Research Affects You

There are many reasons to participate in research. Perhaps you or a loved one suffers from a condition without an established cure. Maybe you want to contribute your opinion or experiences on a topic that interests you.

Nearly all of the medicines, therapies, and devices we rely on every day were designed and refined through trials involving human research participants. The Office for Human Research Protections (OHRP) provides educational materials and videos available online.

Learn the Basics

Short videos explaining key ideas behind research participation.

What is clinical research? Medical research involving people to test new treatments and therapies · 2-min video
What is informed consent? Understanding risks and benefits before you decide · 2-min video
What is the Belmont Report? The 1979 foundation for protecting research participants · 1-min video
Clinical Research Glossary Research terms and meanings (MRCT Center / NIH)

Research & Clinical Trials at RUHS

Finding studies and participant information at Riverside University Health System.

Patient Information (CECORC) RUHS clinical research patient information
RUHS Studies on ClinicalTrials.gov Studies with RUHS principal investigators

Research Participant Guidance

Trusted resources to help you understand participation.

Glossary of Clinical Trial Terms
Education Before Participation
NIH Resources for Participants
Becoming a Research Volunteer: It's Your DecisionPamphlet
Veterans' Participation in Research
Research Volunteer Informational Videos (OHRP)
PubMed Database

Kids in Research

Resources for parents considering a study for their child.

Children & Clinical Studies (NIH)
Should Your Child Be in a Clinical Trial? (FDA)
"What is Medical Research" — Comic for Kids

Public Health & Research News

Report Adverse Events (FDA)
Easy-to-Read Health & Safety Info (NIH)
Agency for Healthcare Research and Quality (HHS)
News About Clinical Trials (AHRP)
Center for Information & Study on Clinical Research Participation

Right to Try

The Right to Try Act is one way for patients who have been diagnosed with life-threatening diseases or conditions, who have tried all approved treatment options, and who are unable to participate in a clinical trial, to access certain investigational treatment options.

A patient who is eligible for Right to Try is a patient who has:

  • A life-threatening diagnosisDiagnosed with a life-threatening disease or condition.

  • Exhausted approved optionsTried all approved treatments and is unable to participate in a clinical trial involving the eligible investigational drug, as certified by a qualified physician.

  • Provided informed consentThe patient, or their legally authorized representative, has provided written informed consent to the treating physician.

If you are interested in Right to Try, discuss this pathway with your doctor. For more information, watch this 5-minute video or visit the FDA Right to Try webpage.

Questions to Consider Before Participating

Thinking through these questions can help you decide whether a study is right for you.

Does the study demand a large time commitment or expense?
Consider things like commuting to and from appointments. There should be no cost to you for any research procedures; however, you or your insurance will be billed as usual for any care you would receive even if you weren't participating in the research.
Are there potential risks or side effects?
The research team must inform you of any risks or side effects before you decide to participate. This is part of the informed consent process.
Are there benefits?
Many studies involve control groups or placebos. If you are in such a group, you will not receive the experimental treatment, but you will be fulfilling an important role by helping researchers measure the effectiveness of the experimental procedure, drug, or device.
Who is conducting the study?
The Principal Investigator (PI) may be a physician, educator, student, or a member of a non-profit or for-profit organization. You may want to find out what company or institution is funding the study.
Who has reviewed and approved this study?
At most hospitals and institutions that receive government or sponsored funding, studies involving human subjects are reviewed by a committee of physicians, scientists, community members, and students who assess the study's safety and ensure participants' rights are protected according to federal law. This committee is called an Institutional Review Board (IRB).
How will my privacy be protected, and who will have access to my records?
Ask the study coordinator or a member of the research team how they plan to store your information and how long they plan to keep it. Ask whether your identity will be kept anonymous or whether they wish to record personally identifiable information such as your address, phone number, or Social Security number.
What if I no longer want to participate?
No one can force you to participate in research or to continue if you wish to withdraw. A member of the research team should make this clear to you when you agree to participate.

Complaints, Concerns, or Reports of Violations

File or inquire about a human-subjects–related complaint, concern, or report of a violation. We're independent of the research team and here to advocate for participants.

Contact the IRB