The UCSF Research Participant Registry (Registry) collects self-reported health information from volunteers and queries against study eligibility criteria for those investigators using the Participant Recruitment Service to enroll participants in their research studies via the Regsitry. This leaves a large gap of research studies that are not made readily available to potential research participants through this resource. For instance, a person may not have a specific condition for which they would appear in study-specific eligibility queries but are interested in a particular area, such as weight loss or nutrition studies. Simply asking Registry volunteers what they therapeutic areas or study types they are interested in doesn’t go far enough to close the gap for willing volunteers being connected to research of interest that could otherwise stimulate continued or expanded research participation.
Combining the resources of the Registry with the information on research at UCSF available in Profiles and the connectivity possible through outreach we feel we can close this gap. By providing Registry volunteers with a biannual feedback survey that specifically asks them which therapeutic areas or study types they have an interest in, we can then search UCSF Profiles and contact investigators to let them know of the willing pool of potential research participants whom they could then contact.
We propose to develop brief web-based surveys bi-annually to collect feedback from current Registry participants about their experience with the Registry- inquiring specifically as to what therapeutic areas or types of research they are interested in.
- Identify investigators and researcher via UCSF Profiles that are conducting research in therapeutic areas identified in the survey.
- Use the data collected from UCSF Profiles to contact researchers notifying them of potential research participants for their studies.
- The PRS outreach coordinator will liaise between investigator and participants to providing excellent customer service and general information on research participation.
- Utilize and integrate UCSP Profiles API
Criteria and metrics for success:
- # Registry participants that respond to feedback survey
- # different therapeutic areas identified as compared to those using the Registry
- # connections/referrals made between Registry participants and researchers
- Inter-departmental collaborations and satisfaction survey among UCSF researchers
$25,000 includes costs for coordination, survey development and implementation, submission to CHR, collecting survey responses and reporting, querying and reporting database information on UCSF Profiles and UCSF Research Participant Registry, integrating outreach and communication efforts with UCSF investigators, connecting potential participants directly with investigators.
Participant Recruitment Service
CTSI Virtual Home (UCSF Profiles)
UCSF HRPP (iMedris) -as suggested by comments
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