{"id":746,"date":"2023-12-22T13:07:20","date_gmt":"2023-12-22T18:07:20","guid":{"rendered":"https:\/\/www.rochester.edu\/ohsp\/?page_id=746"},"modified":"2026-09-09T17:12:29","modified_gmt":"2026-09-09T21:12:29","slug":"research-subjects","status":"publish","type":"page","link":"https:\/\/www.rochester.edu\/ohsp\/research-subjects\/","title":{"rendered":"Information for Research Subjects"},"content":{"rendered":"<p>True to the University of Rochester&#8217;s Mission Statement, &#8216;Learn, Discover, Heal, Create\u2014and Make the World Ever Better&#8217;, <a href=\"https:\/\/www.rochester.edu\/research\/\">research has been a long-standing tradition at the University of Rochester<\/a>. Our researchers are among the nation&#8217;s leaders across a wide range of fields, including medicine, human behavior, education, politics, optics and economics.<\/p>\n<p><a class=\"button ghost-button--blue\" href=\"#openstudy\">Find an open research study<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>True to the University of Rochester&#8217;s Mission Statement, &#8216;Learn, Discover, Heal, Create\u2014and Make the World Ever Better&#8217;, research has been a long-standing tradition at the University of Rochester. Our researchers&hellip;<\/p>\n","protected":false},"author":36,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"class_list":["post-746","page","type-page","status-publish","hentry"],"acf":{"lead_in":"","display_title":"Information for Research Subjects","subtitle":"Learn about becoming a research participant at the University of Rochester","call_to_action":"","hero_image_placement":"no_image","hero_media":"images","hero_pattern_option":"","hero_video":"","hero_image_landing":"","hero_image_landing_two":"","hero_image_landing_three":"","content_modules":[{"acf_fc_layout":"accordion_new","anchor_id":"","classes":"","title":"<h2>FAQs: Participating in research<\/h2>","description":"Participating in research can be a fun and exciting way to give back to your community, but it doesn't necessarily come without risk. Becoming a research participant is an important decision that should be taken seriously.","background":"plain","background_color":"#ffffff","style":"row_blank","expand":"no","accordions":[{"acf_fc_layout":"title","sub_heading":"Background and overview"},{"acf_fc_layout":"accordion","accordion_title":"What is a research study?","icon":"","row_content":"Research studies are done to discover new information or to answer a question about how we learn, behave, and function. Some studies might involve simple tasks like completing a survey, being observed among a group of people, or participating in a group discussion. Other studies, sometimes called clinical trials, involve more risky procedures like testing a new drug or medical device.","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"Who can participate?","icon":"","row_content":"Each research study has its own set of criteria to determine who can participate. This depends on the research question being asked and may include restrictions based on age, behaviors, health status, or other traits.","accordion_anchor":""},{"acf_fc_layout":"title","sub_heading":"Deciding to participate"},{"acf_fc_layout":"accordion","accordion_title":"Why should I participate?","icon":"","row_content":"Research is designed to benefit society. This might include learning how to live healthier lives, how to better treat conditions or diseases, why we do the things we do, or how we learn and develop. And while there are several reasons why people choose to participate in research, most people participate based on the possibility of helping themselves or others.","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"Will I benefit from participating?","icon":"","row_content":"It\u2019s important to understand that you may not directly benefit from participating in research. In fact, with a lot of research, you will not receive any benefit. For some types of research however, there may be a possibility that you could receive benefit, but there is no guarantee.","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"What are the risks of being in a study?","icon":"","row_content":"Most studies involve some risk, though the risks can range from very small to very serious. Some examples of risks include:\r\n<ul>\r\n \t<li>side effects or reactions to experimental drugs, treatments, or procedures<\/li>\r\n \t<li>feeling anxious or uncomfortable<\/li>\r\n \t<li>breach in confidentiality or invasion of privacy.<\/li>\r\n<\/ul>\r\nSide effects or other risks you might experience may be temporary or go away with treatment, but in rare cases they may be permanent, cause disability, or be life threatening. There may also be risks in participating that we don\u2019t know about.","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"What can I expect if I decide to participate?","icon":"","row_content":"To start, you will be given information about the study so that you can make an informed decision about whether or not to participate. You will also be given an opportunity to ask questions about the study. This process is called <a href=\"#informedconsent\">informed consent<\/a>. Before you can start the study, you need to agree to participate (i.e., consent). Participation is always voluntary.\r\n\r\nOnce you provide consent, the specific procedures or activities you\u2019ll be asked to complete can vary widely and depend on what is being studied. Regardless, all the activities you will be asked to complete will be described during the consent process.","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"What do I need to know before I agree to participate?","icon":"","row_content":"Before you agree to be in the study, make sure you have a solid understanding of the following:\r\n<ul>\r\n \t<li>the voluntary nature of the study<\/li>\r\n \t<li>why the study is being done<\/li>\r\n \t<li>who is doing the study<\/li>\r\n \t<li>the procedures, activities, tests, or treatments involved (including how long they will take, how often they have to be completed, and whether there are any other treatment options available rather than being in the study)<\/li>\r\n \t<li>potential risks, discomforts, or side effects<\/li>\r\n \t<li>potential benefits to participating, if any<\/li>\r\n \t<li>how your privacy will be protected<\/li>\r\n \t<li>how long your participation will last<\/li>\r\n \t<li>what will happen if you are injured while participating<\/li>\r\n \t<li>the costs to you, if any<\/li>\r\n \t<li>what to do if you change your mind about participating<\/li>\r\n \t<li>whom to contact with questions, concerns, or problems<\/li>\r\n<\/ul>","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"How much time will it take?","icon":"","row_content":"Each study is different, so time requirements will vary. Some may require very little of your time, perhaps only 5\u201310 minutes, while others may require multiple visits over an extended period of time, sometimes up to several years. Your time commitment for a particular study will be described during the consent process.","accordion_anchor":""},{"acf_fc_layout":"title","sub_heading":"informed consent"},{"acf_fc_layout":"accordion","accordion_title":"What is informed consent?","icon":"","row_content":"Informed consent is the process of telling interested individuals what is involved in taking part in a specific research study. Typically, this includes:\r\n<ul>\r\n \t<li>reviewing written information<\/li>\r\n \t<li>giving the potential volunteer time to review this information while considering participation (taking it home to review with friends or family, if desired)<\/li>\r\n \t<li>discussing the information verbally<\/li>\r\n \t<li>answering any questions<\/li>\r\n<\/ul>\r\nOnce all of the information is provided to you and your questions are answered, you will then be asked to decide whether or not to take part in the study.\r\n\r\nAll decisions are voluntary, and you must provide your agreement (i.e., consent) before any study activities can begin. Usually, this involves signing a consent form. Although, for some studies, verbally agreeing to participate may be sufficient.\r\n\r\nOnce you provide consent to be in the study, you will continue to receive important information about your participation throughout the study.","accordion_anchor":"informedconsent"},{"acf_fc_layout":"accordion","accordion_title":"Why is informed consent important?","icon":"","row_content":"It\u2019s important to understand what is involved in taking part in a research study and to carefully consider what that means for you. Research can pose risks to your health, safety, and welfare, so it\u2019s important to understand exactly what those risks are.\r\n\r\nIt\u2019s also important to understand that taking part in research is voluntary. You make the decision about whether or not to participate, and if you agree to take part, you can always change your mind later.","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"Who can sign the form?","icon":"","row_content":"State law determines who can provide consent. In New York State, only individuals 18 years of age and older can provide consent. Minors, based on their age and ability, are usually asked for their agreement to participate in research, but their parent or legal guardian must also provide their permission to participate. Other special considerations are also made when a minor is a ward of the state or adults are unable to make decisions for themselves.\r\n\r\nIf you have questions about who can or cannot provide consent, be sure to ask the study team.","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"Are there important takeaways about informed consent that I should keep in mind?","icon":"","row_content":"The following key points are most important about informed consent:\r\n<ul>\r\n \t<li>Being in a study is voluntary\u2014it is your choice.<\/li>\r\n \t<li>If you join a study, you can change your mind and stop at any time.<\/li>\r\n \t<li>If you have questions about anything that is not clear to you, you can ask them at any point of time before, during, or after the study.<\/li>\r\n \t<li>If you feel you need more time or information to make an informed decision about whether or not to take part in the study, do not hesitate to ask for it.<\/li>\r\n<\/ul>","accordion_anchor":""},{"acf_fc_layout":"title","sub_heading":"Subject Protections"},{"acf_fc_layout":"accordion","accordion_title":"How am I protected?","icon":"","row_content":"Research studies involving humans must be approved and monitored by an Institutional Review Board (IRB). An IRB is a committee of individuals responsible for reviewing research to ensure adequate protections are in place to protect the people who take part.\r\n\r\nFor each study reviewed, the IRB checks to see that:\r\n<ul>\r\n \t<li>there is a good reason to conduct the study<\/li>\r\n \t<li>the risks related to participating are the least possible<\/li>\r\n \t<li>the risks related to participating are reasonable given the knowledge that will be gained from conducting the study<\/li>\r\n \t<li>the plan for selecting subjects to participate is fair<\/li>\r\n \t<li>subjects will be provided enough information about the study<\/li>\r\n<\/ul>","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"How will my information be protected?","icon":"","row_content":"Protecting the information you provide to researchers is a high priority, particularly if you provide health-related or sensitive information.\r\n\r\nAs part of the IRB approval process described above, all researchers must provide a plan to adequately protect the information they plan to collect in order for the study to be approved. This might include assigning a code to the information collected instead of using your name or other identifiable information and storing the information in a secure manner.","accordion_anchor":""},{"acf_fc_layout":"accordion","accordion_title":"Can I change my mind about being in a study once I start?","icon":"","row_content":"You are free to withdraw from a research study at any time, for any reason. Your relationship with the hospital, clinic, academic institution, or employer will not be affected and you will not lose any benefits to which you are entitled.\r\n\r\nNote that in some cases, a researcher may decide to end your participation in the study early. This may happen if the study is no longer in your best interest, if you can no longer complete study activities, or if the study ends early for some other reason.","accordion_anchor":""}]},{"acf_fc_layout":"card_grid","anchor":"","css_class":"","title":"<h2 style=\"text-align: center;\">Additional participant resources<\/h2>","description":"","background_color":"#FFFFFF","width":"width-large","columns":"2","cards":[{"card_title":"<h5>Downloadable information<\/h5>","card_text":"<ul>\r\n \t<li><a class=\"u-link-pdf\" href=\"https:\/\/www.rochester.edu\/ohsp\/wp-content\/uploads\/2023\/12\/Participating-in-Research-Flyer.pdf\">Participating in Research Overview<\/a><\/li>\r\n \t<li><a class=\"u-link-pdf\" href=\"https:\/\/www.rochester.edu\/ohsp\/wp-content\/uploads\/2023\/12\/Informed-Consent-Flyer.pdf\">Informed Consent<\/a><\/li>\r\n<\/ul>","card_background_color":"#f4f4f4","card_hover_color":"transparent","card_link":"","card_hover_arrow":"","card_image":"","card_image_size":"","card_image_placement":"","card_image_hover_state":"hover_fade","card_image_link":""},{"card_title":"<h5>External resources<\/h5>","card_text":"<ul>\r\n \t<li><a class=\"u-link-external\" href=\"https:\/\/www.hhs.gov\/ohrp\/education-and-outreach\/about-research-participation\/index.html\">About Research Participation<\/a> (Department of Health &amp; Human Service)<\/li>\r\n \t<li><a class=\"u-link-external\" href=\"https:\/\/www.childrenandclinicalstudies.org\/\">Children &amp; Clinical Studies<\/a> (National Heart, Lung &amp; Blood Institute)<\/li>\r\n \t<li><a class=\"u-link-external\" href=\"https:\/\/www.nih.gov\/health-information\/nih-clinical-research-trials-you\">Clinical Research Trials and You<\/a> (National Institutes of Health)<\/li>\r\n<\/ul>","card_background_color":"#f4f4f4","card_hover_color":"transparent","card_link":"","card_hover_arrow":"","card_image":"","card_image_size":"","card_image_placement":"","card_image_hover_state":"hover_fade","card_image_link":""}]},{"acf_fc_layout":"card_grid","anchor":"openstudy","css_class":"","title":"<h2 style=\"text-align: center;\">Find an open research study<\/h2>","description":"","background_color":"#f4f4f4","width":"width-large","columns":"2","cards":[{"card_title":"<h5>University research studies<\/h5>","card_text":"<ul>\r\n \t<li>Search <a href=\"https:\/\/www.urmc.rochester.edu\/research\/health-research\/clinical-trials.aspx\">UR Health Research<\/a><\/li>\r\n \t<li>Join the <a href=\"https:\/\/www.urmc.rochester.edu\/research\/health-research\/become-a-volunteer.aspx\">UR Health Research Volunteer Registry<\/a> to be contacted for future studies<\/li>\r\n \t<li>Follow <a href=\"https:\/\/www.facebook.com\/URHealthResearch\">UR Health Research<\/a> on Facebook<\/li>\r\n<\/ul>","card_background_color":"#FFFFFF","card_hover_color":"transparent","card_link":"","card_hover_arrow":"","card_image":"","card_image_size":"","card_image_placement":"","card_image_hover_state":"hover_fade","card_image_link":""},{"card_title":"<h5>External resources<\/h5>","card_text":"<ul>\r\n \t<li><a class=\"u-link-external\" href=\"https:\/\/www.centerwatch.com\/clinical-trials\/listings\/\">CenterWatch Clinical Trials Search<\/a><\/li>\r\n \t<li><a class=\"u-link-external\" href=\"https:\/\/clinicaltrials.gov\/\">ClinicalTrials.gov<\/a><\/li>\r\n \t<li><a class=\"u-link-external\" href=\"https:\/\/www.nih.gov\/health-information\/nih-clinical-research-trials-you\/list-registries\">National Institutes of Health List of Registries<\/a><\/li>\r\n \t<li><a class=\"u-link-external\" href=\"https:\/\/www.researchmatch.org\/\">ResearchMatch<\/a><\/li>\r\n<\/ul>","card_background_color":"#FFFFFF","card_hover_color":"transparent","card_link":"","card_hover_arrow":"","card_image":"","card_image_size":"","card_image_placement":"","card_image_hover_state":"hover_fade","card_image_link":""}]},{"acf_fc_layout":"interstitial","anchor_id":"","classes":"","layout":"layout_inline","lead-in":"share your thoughts","title":"Report an issue, concern, or complaint","content":"If you have participated in University of Rochester research and would like to report an issue, concern or complaint about the research you, or a family member, has participated in, please do so via our <a href=\"https:\/\/www.rochester.edu\/ohsp\/wp-content\/uploads\/2026\/06\/Report-Form-for-Research-Concerns-or-Complaints.docx\">Report Form for Research Concerns or Complaints<\/a>.","call_to_action":{"title":"Share your feedback","url":"https:\/\/www.rochester.edu\/ohsp\/feedback\/","target":""},"bg_color":"#00205b"}]},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Information for Research Subjects - Office for Human Subject Protection - University of Rochester<\/title>\n<meta name=\"description\" content=\"Resources for those interested in becoming a human research participant. FAQs with key definitions, process overviews, &amp; how to join a study.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.rochester.edu\/ohsp\/research-subjects\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Information for Research Subjects - Office for Human Subject Protection - University of Rochester\" \/>\n<meta property=\"og:description\" content=\"Resources for those interested in becoming a human research participant. 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