Resources: For Research Participants - Participant Resources
Before you decide whether to participate in a research study, it’s a good idea to do some research of your own. Learn as much as you can about research in general and about the studies that you are considering. If you’re looking at clinical trials, discuss the potential benefits and risks with your physician. Make sure there are procedures in place to protect participants. And, throughout the research process, don’t hesitate to ask questions or to voice any concerns that you may have.
The U.S. Department of Health and Human Services (HHS) Office for Human Research Protections (OHRP) works to protect the rights and welfare of participants in research conducted or supported by HHS. An important part of protecting research participants is helping them understand research and how participating might affect them so that they can make an informed decision about whether to volunteer.
OHRP has developed a website called About Research Participation, in both English and Spanish, to inform and educate the public about research and research participation.
About Research Participation includes informational videos, infographics, a list of questions to ask researchers, and additional resources.
OHRP’s informational video for the general public provides basic information about informed consent and what information a potential participant will be given to help decide whether to volunteer for a research study. The Spanish language version of this video is also available.
Find “Informed Consent for Research: What to Expect” in English at: https://www.hhs.gov/ohrp/education-and-outreach/about-research-participation/informational-videos/index.html
Find the *NEW* Spanish Language version here: https://www.hhs.gov/ohrp/education-and-outreach/about-research-participation/videos-informativos/index.html
Following are links to helpful information:
- Center for Information and Study on Clinical Research Participation. Be an Informed Participant
- CenterWatch. About Clinical Trials
- ClinicalTrials.gov Resource Information
- Dana Farber Cancer Institute. Entering a Clinical Trial: Is It Right for You?
- Harvard Catalyst. Research Participant Resources
- Multi-Regional Clinical Trials Center. Clinical Research Glossary
- National Cancer Institute. Protecting Participants in Clinical Trials: Links to NCI Materials
- NIH Clinical Center. Participate in Clinical Studies
- Office for Human Research Participants. Questions to Ask Before Participating in a Research Study
- Alpha-1 Foundation
- ALS Association. The ALS Association Active Research Projects Searchable Database
- Asthma and Allergy Foundation of America. Clinical Trials Research Center
- CenterWatch. Find a Trial
- ClinicalTrials.gov List Clinical Trials
- The Leukemia & Lymphoma Society Clinical Trial Service
- National Breast Cancer Coalition. Breast Cancer Research Initiative
- National Cancer Institute. Search for Clinical Trials
- National Health Council Membership Roster. Links to web sites of more than 115 Council members, many of which include information on research studies.
- Harvard Catalyst. Educating Children and Families about Medical Research
- Multi-Regional Clinical Trials Center. Pediatric Research Information Materials
- National Cancer Institute. Informed Consent: Children’s Assent to Clinical Trial Participation
- Consortium of Social Science Associations. Why Support Social and Behavioral Science Research?
- National Science Foundation. FAQs. An explanation of the types of harm that could result from social and behavioral science research.