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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This would be a great use of
This would be a great use of UCSF Profiles APIs to support the development of research studies. Given a MeSH term, the Profiles software makes it easy to get information about top UCSF researchers associated with that topic. If this is an ongoing process, it would be simple to turn that into a script or a tool that can plug into your workflow.
Awesome idea, Anirvan! That
Awesome idea, Anirvan! That should work out really well.
Yes we always hope that we
Yes we always hope that we can somehow link everything related to recruitment of studies back to studies listed in profiles, since profiles is a well-established system and easily searchable.
It seems like this solution
It seems like this solution could provide more targeted referrals if/when UCSF Profiles has study data linked to researchers. Would it make sense to reachout to iMedRIS about potential collaboration?
Thanks for the suggestions,
Thanks for the suggestions, Brian & Anirvan. I agree, linking with iMedris would provide the most accurate info in terms of current research studies and Profiles provides the easy, searchable contact info for the investigator. Does UCSF Profiles have any plans to pull that data from iMedris? I think adding investigators current research protocols would be a nice edition to Profiles (maybe on one of the new tabs) not only for the general public looking for research studies to join but possibly fellow researchers looking for collaboration opportunities. Profiles just offers such a nice easy platform that compiles all relevant information including contact info. Potentially a 3-way collaboration?? I guess in the meantime, partnering with iMedris might be a good interim solution. If the "Publicly Searchable Database of Recruiting Studies" proposal gets support we'd definitely would be able to link volunteers through that database as well.
the short-term solution would
the short-term solution would be to receive reports from imedris since it is not relying on short-term time-sensitivity.
I worry a bit that you might
I worry a bit that you might wind up referring people in the Registry to PIs at UCSF whose area of research might be of interest, but who don't have on-going studies that are enrolling participants. This could lead to a "dead end" and some frustration for Registry participants?
Hi Deb, thanks for your
Hi Deb, thanks for your comments. You bring up a good point. We are definitely trying to alleviate that frustration and that's where the outreach coordinator role would be key in doing the navigation for the participants. The outreach coordinator would act as the liaison or navigator, to do the "heavy lifting" so to speak, between the Registry participant and PI/study coordinator by contacting that study team on behalf of the participant to confirm they are still enrolling patients, basic eligibility criteria, general study info, etc. The outreach coordinator could easily query the Registry participants self-reported health info (more or less pre-screening) to see if the patient might be eligible for the given study, and then circle back to the patient to let them know their options. It would be an added level of customer service that I think both the Registry participants and PIs would appreciate.
But you’re right, the key to efficiency and streamlining this process would be easy access to a searchable database of current UCSF active/recruiting clinical trials, and linking it to easy to find PI contact information (which Profiles provides).
Profiles is a great
Profiles is a great collaborative opportunity to leverage a successful and up-to-date data system that is accessed by the general public. Providing the customer service through an outreach coordinator will be key to bridging the gap.
seems like interfacing with
seems like interfacing with the ClinicalTrials.gov website data to see the Recruitment Status for studies would be an important step as studies may be "Not yet recruiting", "Recruiting", "Active, not recruiting", Completed", or "Unknown". In addition, the Inclusion and Exclusion Criteria can be obtained.