UCSF Research Participant Registry

Facilitating Enrollment Into UCSF Clinical Studies Via a Volunteer Research Participant Registry

The UCSF Clinical and Translational Science Institute (CTSI) Consultation Service provides recruitment services and facilitates the enrollment of research participants into UCSF clinical studies. The Recruitment Services will be accessible to all researchers at UCSF and affiliated institutions and will address the common problems that investigators encounter in the recruitment process.

Recruitment Services considered and integrated Committee on Human Research (CHR) and HIPAA regulations for ensuring human subject rights, participant privacy, and data security into the recruitment workflow and data collection/extraction methods. Recruitment Services, therefore, requests approval to implement these processes systematically for all studies that have already obtained CHR approval to begin recruitment activities.

Study Overview

• Status: Terminated
• Conditions: Healthy; Any Disease or Condition

Detailed Description

The UCSF Research Participant Registry (http://registry.ucsf.edu) is a secure, standalone database that actively collects and stores data from willing volunteers who visit its website. The UCSF Registry is a cornerstone of the UCSF Recruitment Service (RS). Both the Registry and the RS are among several initiatives implemented by the UCSF Clinical & Translational Science Institute.

The chief purpose of the RS is to facilitate the enrollment of research participants into UCSF clinical studies. The primary function of the Registry is to expand the pool of potential clinical research volunteers. The Registry stores self-reported identifiable health information in a searchable database that is compliant with the privacy requirements of the Health Insurance Portability and Accountability Act (HIPAA). This information is then used by the RS for the future identification and recruitment of potentially eligible participants for specific UCSF studies.

Registry participants whose data matches the major eligibility criteria for a specific study will be sent recruitment materials about the study. Contact information for the investigator or RS staff will also be included in the e-mailing. Participants are then free to choose whether to respond or ignore the study recruitment information.

• Study Type: Observational
• Enrollment (Actual): 1541

Contacts and Locations

Study Locations

• United States
  • California
    • San Francisco, California, United States, 94107
      • Clinical & Translational Science Institute, University of California San Francisco

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

General public. Anyone may join the UCSF Registry, but adult & pediatric residents of the San Francisco Bay Area are targeted because of their proximity to UCSF research clinics.

Description

INCLUSION CRITERIA

• Adults age 18 years or older
• Minors/children with consent from parent or guardian (Parents or guardians must provide their own contact information and then complete the questionnaire using the child's health information.)

EXCLUSION CRITERIA

• Failure to provide consent
• Minors/children without consent of parent or guardian

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort
Potential research participants; UCSF Registry represents a single recruitment pool of individuals who have consented to be contacted about future studies for which they may be eligible based on self-reported health information.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Increased screening & enrollment for UCSF clinical studies	By broadening the pool of potential volunteers, the Registry is expected to increase the number of screened & enrolled participants in UCSF studies.	4 years

Collaborators and Investigators

• Sponsor: University of California, San Francisco
• Investigators: Principal Investigator: Deborah G Grady, MD, MPH,FACP, Clinical & Translational Science Institute, University of California San Francisco

Publications and helpful links

Helpful Links

• UCSF Research Participant Registry

Study record dates

Study Major Dates

• Study Start: March 1, 2012
• Primary Completion (Actual): February 1, 2015
• Study Completion (Actual): February 1, 2015

Study Registration Dates

• First Submitted: October 26, 2012
• First Submitted That Met QC Criteria: October 29, 2012
• First Posted (Estimate): October 30, 2012

Study Record Updates

• Last Update Posted (Estimate): March 11, 2015
• Last Update Submitted That Met QC Criteria: March 9, 2015
• Last Verified: March 1, 2015

More Information

Terms related to this study

• Keywords: Health Surveys; Patient Recruitment; Research Subject Recruitment; Research Subject Selection; Selection of Subjects; Health Questionnaires; Health Interviews
• Other Study ID Numbers: 12-08393; UL1TR000004 (U.S. NIH Grant/Contract)