What is ResearchMatch?

ResearchMatch is a free and secure tool that helps match willing volunteers with eligible researchers and their studies at institutions across the country. ResearchMatch is not a research project, it is a list of willing individuals who are interested in research. These individuals are called ResearchMatch Volunteers. ResearchMatch provides a tool that allows you to be contacted by researchers about their studies, and in some cases to provide your opinion or experience as it relates to designing a research study.

Are there any benefits, costs or risks of joining ResearchMatch as a Volunteer?

As a ResearchMatch 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 not enough volunteers to take part. Also, there are many people who want to join research studies, but do not know how.

You may benefit from joining ResearchMatch as it may:

1. Reduce the time you spend looking for research studies, or figuring out how to take part in research;
2. Improve your chances of being matched with research studies that interest you;
3. Help you learn more about your community’s the research and resources or about your area of interest; and,
4. Help you be a part of a national group of volunteers that might help improve the health of others, and impact thefuture of research for everyone.

Benefits to society may be that research studies are completed sooner. This 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 ResearchMatch. Also, ResearchMatch cannot guarantee using this matching tool means you will be contacted by a researcher for any specific research study, either now or in the future.

There is a very small risk that some of your profile information, may be released without your permission, but ResearchMatch takes many steps to keep your personal information private, secure, and confidential until you allow ResearchMatch to release it. You may get frequent emails from researchers using ResearchMatch 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 ResearchMatch. There is no cost to join ResearchMatch.

Who can join?

Anyone who lives in the United States or Puerto Rico can join ResearchMatch as a Volunteer. You do not have to be diagnosed with a health condition to be a ResearchMatch Volunteer. If you decide to join, you will be asked if you are registering for yourself or someone else when you start the Volunteer registration form. A parent, legal guardian, or caretaker can register someone under the age of 18. They can also register an adult that is not be able to enter his or her own information.

What do I have to do to join?

Joining ResearchMatch is easy! It should take less than 10 minutes. If you decide to sign up, you will be asked a few questions about yourself, like 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 ResearchMatch 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. You can also remove yourself from ResearchMatch if you wish.

When you register, you will create a unique username and password that will give you access to your ResearchMatch profile. Do not share your username and password with anyone. You can change your username and password at any time. Contact ResearchMatch immediately if you think someone else has used your username and password or if you have any other security concerns.

What happens once I register?

Once you join ResearchMatch your non-identifiable information becomes part of a pool of data. Researchers search through this pool when looking for people to contact about their studies. These studies will already be reviewed by an Institutional Review Board (IRB). IRBs look at the risks and benefits of each research study. ResearchMatch volunteers will receive a monthly eNewsletter with information about new features on the ResearchMatch website. There will also be information related to research participation. Volunteers can choose to ‘unsubscribe’ from the monthly newsletters at any time and still in ResearchMatch.

To limit access to your information, researchers will send their first study message to you through ResearchMatch’s secure web system. This takes form of an email message that ResearchMatch will send to the email address connected to your ResearchMatch profile. After you get a researcher’s message through ResearchMatch, you will be able to read the message and see basic information about the study. These messages may include follow-up surveys that will help you find out if you qualify for a specific study.

If you want to learn more about a study, or want the researcher to contact you, you can respond by saying “yes”. A “yes” response will send 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 ResearchMatch, you do not have to take part in any study. 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.

ResearchMatch will perform quality and evaluation metrics on an on-going basis. Part of that process may involve collecting non-identifiable information about your contact and enrollment status in researchers’ studies. This will help us see how useful this tool is to ResearchMatch’s researchers and institutions.

ResearchMatch Disclaimer

ResearchMatch does not promise that researchers will contact you about studies through the ResearchMatch system. Also, ResearchMatch does not look at any study or recruitment message before it is sent to you. ResearchMatch does not support any specific research, research institution, or study. Receiving study recruitment messages does not mean ResearchMatch has reviewed the study. It also does not mean that ResearchMatch recommends that you participate in that study.

How is my information protected?

ResearchMatch respects your privacy. It takes privacy very seriously. Your personal information will be sent and stored in a secure system. Please see the ResearchMatch Privacy Statement for more details.

ResearchMatch will never sell, rent, or lease your personal information.

ResearchMatch will only give your contact information to researchers when you say it is okay. Once you have said it is okay to release your contact information, ResearchMatch no longer manages the connection between you and your research study. ResearchMatch is not responsible for how your contact information is handled by the research study.

If you ask ResearchMatch to release your information, and you have questions or concerns about a particular study, you can contact the researcher and/or that study’s Institutional Review Board.

What if I change my mind about being part of ResearchMatch?

You are able to remove your personal information from ResearchMatch at any time by going to your profile and selecting this option. If you have already released your information to some researchers or study databases, removing yourself from ResearchMatch does not mean that your contact information will be removed from these other places. It only means that future researchers and studies will no longer have access to your profile when looking for people who match their study in the ResearchMatch.

What if my contact and/or health information has changed?

You will be able to change or update your profile information at any time. Simply log into your profile and change your personal or health information. All volunteers may receive a courtesy message from ResearchMatch on a regular basis to make sure they still want to be in ResearchMatch. This message will also remind Volunteers that they can update their profile at any time.

Who is involved in ResearchMatch?

ResearchMatch has been developed through a collaboration between all of the institutions featured in the ResearchMatch Network. ResearchMatch is coordinated by Vanderbilt University Medical Center. ResearchMatch is a tool available to all researchers with approved studies at the institutions shown in the ResearchMatch Network. ResearchMatch has been partially funded by the National Center for Advancing Translational Sciences (NCATS) through the National Institutes of Health (NIH).

Does ResearchMatch provide health care services?

No. ResearchMatch 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 regular doctor.

AGREEMENT

By agreeing to this Volunteer Agreement, you willingly agree to let ResearchMatch use and share your personally identifiable information on your ResearchMatch profile as described here and in the ResearchMatch Privacy Statement. You also agree to let ResearchMatch 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 finishing the registration process, you represent and warrant that you live in the United States or Puerto Rico , 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 ResearchMatch, you will give accurate information about yourself. You agree that if any information you provide is inaccurate, ResearchMatch may keep you from accessing ResearchMatch. 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 ResearchMatch volunteer registry as soon as you submit this form.

Thank you for learning more about ResearchMatch!

Do you have questions or concerns?

For general questions, please email ResearchMatch at info@researchmatch.org or visit the Research Match Contact page.

For more information about giving consent or about your rights as a person on ResearchMatch, please feel free to call the ResearchMatch Institutional Review Board of Record Office at (615) 322-2918 or toll free at (866) 224-8273.

Date of IRB Approval: 8/20/2024 | Date of IRB Expiration: 8/19/2025