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Research Participant Registry

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The UR CTSI hosts a registry of patients and members of the community who are interested in learning more about health research. Researchers can leverage the registry to identify potential research participants and share information about their health research studies.

Jump to:    • Features    • Get Started    • Resources    • FAQs

 

Features

The UR CTSI Research Participant Registry consists of over 15,000 local people from a broad range of ages and backgrounds who are interested in receiving information about health research studies.

When signing up for the registry, we ask for the following:

  • Race, ethnicity, sex, date of birth, primary language (English, Spanish, ASL, etc.)
  • Phone number, email, mailing address, as well as contact and texting preferences
  • Conditions of interest, like “Allergies,” “COVID-19,” “Healthy Volunteer,” or “Sleep Disorders”
    • Note: Conditions selected do not indicate a diagnosis. No health information is collected on registry participants.

Benefits

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Get Started

If you have an IRB-approved flyer, we can email it to the full registry list (typically without additional IRB approval). Share your IRB-approved flyer with the Research Help Desk. We’ll work with you to get it scheduled for distribution.

Alternatively, we can provide you with a list of potentially eligible people from the registry (including all demographic and contact information) that meet your study inclusion and exclusion criteria. You can contact anyone on the list with more information about your research study.

To receive a list of people, be sure to include the following statement in the recruitment plan section of your protocol: This study will identify potential subjects for recruitment using the UR CTSI Research Participant Registry, STUDY00001978‚Äč. Any recruitment emails, phone scripts, or letters that you plan to use should be reviewed by the IRB as well.

Once your protocol is approved, you can submit an online request for a list to the UR CTSI Research Participant Registry.

Get Training

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Resources

UR Health Research website

Community members can sign up for the registry on the: URHealthResearch.urmc.edu

UR Health Research Marketing Materials

The UR CTSI and URMC Marketing team have developed a set of downloadable marketing materials to encourage participation in health research. These materials, including a brochure, flyer, several posters, and examples of social media ads, offer the UR Health Research website as a resource to learn more and get involved in studies. Feel free to share these items with your patients or the community or use them as inspiration to design your own ads: UR Health Research Marketing Toolkit

Past Projects

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FAQs

Does the registry include minors and are we able to contact them?
At the start of the registration form, community members are asked if they would like to sign up someone else, like a child, a parent, or a friend. They can choose to add a minor to the registry by proxy, using their own contact information and the demographic information of the minor. Proxies that represent minors can be contacted about research studies that seek to enroll minors.

Is everyone in the registry potentially a healthy volunteer?
We do not collect any health information on anyone that signs up for the registry. Researchers have told us that the registry is particularly useful for recruiting healthy volunteers. However, we know that many in our registry have conditions that led them to join, so the registry may be useful for recruiting into an intervention group as well.