What is the USC Clinical Trials Registry?
The USC Clinical Trials Registry is a free and secure tool that helps match willing volunteers with eligible researchers and their studies at the University of Southern California and Children’s Hospital Los Angeles. The USC Clinical Trials Registry is not a research project – it is a registry of willing individuals who are interested in research – USC Clinical Trials Registry Volunteers. The USC Clinical Trials Registry is only providing a tool that allows you to be contacted by researchers about their studies.
Are there any benefits, costs or risks of joining the USC Clinical Trials Registry as a Volunteer?
As a USC Clinical Trials Registry Volunteer, you might be able to get involved with research that helps improve the health and well-being of our society. Even now, many research studies end too early since there are too few volunteers to join. Also, there are many people who want to join research studies but do not know how to do so. You may benefit from joining the USC Clinical Trials Registry as it may:
- Reduce the time that you search for research studies and learn about ways to get involved;
- Improve the chances of matching you with research studies that interest you;
- Learn more about the research and resources in your community;
- Be a part of a local group of volunteers that might help improve the health of others and impact the future of research for everyone.
Benefits to society may be that research studies are completed sooner, which may increase general knowledge or improve access to new or different treatments or health practices. There is a chance that there may be no benefit to you for joining the USC Clinical Trials Registry. Also, the USC Clinical Trials Registry cannot guarantee that you will be contacted by a researcher using this matching tool for any specific research study now or in the future. There is a very small risk of loss of confidentiality of your profile information, but the USC Clinical Trials Registry makes many efforts to keep your personal information private, secure, and confidential until you allow USC Clinical Trials Registry to release it. You may get frequent emails from researchers using USC Clinical Trials Registry when your anonymous profile is ‘matched’ with their research studies. If you feel that you are getting too many emails, you may always remove yourself from the USC Clinical Trials Registry. There is no cost to join the USC Clinical Trials Registry.
Who can join?
Anyone who lives in the United States and Puerto Rico can join USC Clinical Trials Registry as a Volunteer. You do not have to be diagnosed with a health condition to be a USC Clinical Trials Registry Volunteer. If you decide to join, you will be asked if you are registering yourself or someone else when starting the Volunteer registration form. A parent, legal guardian or caretaker may register someone under the age of 18 or an adult that may not be able to enter in their own information.
What do I have to do to join?
Joining the USC Clinical Trials Registry is easy and should take less than 10 minutes. If you decide to sign up:
- You will be asked a few questions about yourself, such as your age and contact information. You will also be able to enter details about your health. All of this information will be stored securely and will be kept confidential as described below and in the USC Privacy Statement. You do not have to answer all questions about your health. Only the information that you choose to enter will be a part of your profile. You can edit your profile at any time as well as remove yourself from the USC Clinical Trials Registry if you no longer wish to be in the registry.
- As you register, you will create a unique username and password that will give you access to your USC Clinical Trials Registry profile. Do not share your username and password with anyone else. You may change your username and password at any time. Contact USC Clinical Trials Registry immediately of any unauthorized use of your username and password or any other security concerns.
What happens once I register?
- Once you join the USC Clinical Trials Registry your non-identifiable information (which means they will not have access to your name or contact information) becomes part of a pool of data that researchers may search through when looking for people to contact about their studies. These studies will have already been reviewed by an Institutional Review Board (IRB) that looks at the risks and benefits of each study. USC Clinical Trials Registry volunteers will receive a monthly eNewsletter with information about new features on the USC Clinical Trials Registry website and other information related to research participation. Volunteers can choose to ‘unsubscribe’ from the monthly newsletters at any time and still remain in the volunteer registry.
- To limit access to your information, researchers will send their first recruitment message to you through the USC Clinical Trials Registry’s secure web system. This takes form through an email message that the USC Clinical Trials Registry will deliver to your email address that is connected to your USC Clinical Trials Registry profile.
- After receiving a researcher’s message through the USC Clinical Trials Registry, you will have the option to read the message and see basic information about the study. These contacts may include follow-up surveys that will help you find out if you qualify for a specific study. If you wish to learn more or have the researcher contact you directly, you may respond by saying “yes”. A “yes” response will release your contact information to the researcher.
- At that time, the researcher may share more details with you about his or her study. Remember that by joining USC Clinical Trials Registry, you do not have to take part in any study and you may choose not to respond to a researcher message at any time. Please note: if you respond “No”, your contact information will not be shown to the researcher.
The USC Clinical Trials Registry will perform quality and evaluation metrics on an on-going basis. Part of that process may involve the collection of non-identifiable information regarding your contact and enrollment status in researchers’ studies to see how useful this tool is to the researchers and institutions involved in the USC Clinical Trials Registry.
USC Clinical Trials Registry Disclaimer
USC Clinical Trials Registry makes no guarantee that researchers will contact you regarding studies through the USC Clinical Trials Registry system. Also, USC Clinical Trials Registry does not review any study or recruitment message before it is sent to you. USC Clinical Trials Registry does not endorse any research, research institution, or study. Any recruitment message that you may receive about a study does not mean that the USC Clinical Trials Registry has reviewed the study or recommends that you consider participating in that study.
How is my information protected?
The USC Clinical Trials Registry respects your privacy and takes privacy very seriously. Your personal information will be transmitted and stored in a secure system. Please see the USC Privacy Statement for more details. USC Clinical Trials Registry will never sell, rent or lease your personal information. USC Clinical Trials Registry will only release your contact information to researchers when you authorize this release. Once you authorize the release of your contact information, the USC Clinical Trials Registry is no longer managing the connection between you and your research study or responsible for how your contact information is handled. If you have questions or concerns about a particular study after you have asked the USC Clinical Trials Registry to release your contact information to a researcher, you may contact the researcher and/or that study’s Institutional Review Board.
What if I change my mind about being part of the registry?
You are able to remove your personal information from the USC Clinical Trials Registry at any time by going to your profile and selecting this option. Removing yourself from the USC Clinical Trials Registry does not mean that your contact information will be removed from any researcher or study database for which you have authorized the release of your contact information through the USC Clinical Trials Registry. It only means that future researchers and studies will no longer have access to searching for your anonymous profile when looking for study matches in the USC Clinical Trials Registry.
What if my contact and/or health information has changed?
You will be able to change or update your profile information at any time by logging into your profile and changing your personal or health information. Also, all volunteers may receive a courtesy message from the USC Clinical Trials Registry on a regular basis to confirm that they still wish to be in the USC Clinical Trials Registry and remind them that they can update their profile at any time.
Who is involved in the USC Clinical Trials Registry?
The USC Clinical Trials Registry is a registry that has been developed through a unique institutional collaboration between the University of Southern California and Children’s Hospital Los Angeles as part of the Southern California Clinical and Translational Science Institute. The USC Clinical Trials Registry is an available tool to all eligible researchers with approved studies at the institutions mentioned above. USC Clinical Trials Registry is funded by the National Center for Advancing Translational Sciences through the National Institutes of Health.
Does the USC Clinical Trials Registry provide health care services?
No. The USC Clinical Trials Registry does not provide any medical or healthcare products, services or advice. If you have any questions about your health care of medical condition, please see your own doctor.
AGREEMENT
By agreeing to this Volunteer Agreement, you consent to the use and disclosure of your personally identifiable information on your USC Clinical Trials Registry profile as outlined here and in the USC Privacy Statement. You also agree that the USC Clinical Trials Registry may access, keep or share your registration information if required to do so by law or in the good faith belief that it is necessary to:
- Enforce the terms of this Volunteer Agreement or the site’s Terms of Use
- Respond to your requests for customer service
- Comply with federal, state or local legal process
By completing the registration process, you represent and warrant that you reside in the United States, are at least eighteen years of age, and that you possess the legal right and ability to enter into this Volunteer Agreement. You agree that if you register on the USC Clinical Trials Registry, that you will provide accurate information about yourself. You agree that if any information you provide is inaccurate, USC Clinical Trials Registry may prohibit your access to the USC Clinical Trials Registry. If you register someone who may not be able to register themselves (including individuals under the age of 18 or someone who is unable to register without your assistance), you assert that you are their legal guardian, parent or caretaker and agree to the terms outlined in this agreement.
If you agree, your profile will be added to the USC Clinical Trials Registry volunteer registry as soon as you submit this form.
Thank you
For general questions, please email USC Clinical Trials Registry at info@sc-ctsi.org or visit the USC Clinical Trials Registry Contact page. For additional information about giving consent or your rights as a person in this registry, please feel free to call the USC Clinical Trials Registry at 800-872-2273 or Institutional Review Board of Record Office.
