Create Personalized Connections to Research Interests via the UCSF Research Participant Registry
Publicly Searchable Database of Recruiting Studies
RATIONALE: Realizing that the benefits of the current revolution in biology and oncology would be enhanced by vigorous public support, for the past twenty years, the UCSF Breast Oncology Program (BOP) has implemented comprehensive strategies focused on leveraging advocacy engagements.
Biobanking Inventory Software Evaluation
Rationale: Access to high quality human biospecimens and associated clinical data is essential to translational and clinical research programs. Effective and efficient use of human biospecimens is an important tenet of our role as community-entrusted stewards of these valuable resources. These points are reflective of the conclusions of the CTSI funded (2008-9) Tissue Task Force that engaged Huron Consulting as well as a recent 2011 audit of UCSF tissue banks by UCSF Audit Services.
Rationale: There are currently about 1000 mechanical – 80 degree Celsius freezers in use at UCSF. The majority of these freezers are used to store biomedical specimens for basic research, translational research, clinical trials, and prospective biobanking efforts.
Rationale: Each UC Biomedical campus contains tens to hundreds of biorepositories. These operations collect human biological samples (tissues and fluids) and associated data for use in research. UC biobanks traditionally have established their own governance structure, which includes rules for accessing, storing and sharing samples/data, including informed consent practices. Governance, a complicated process, has myriad ethical implications including risk to individuals, identifiability, and data sharing.
Rationale. Successful recruitment and retention of ethnically diverse research participants in clinical studies depends heavily on the comprehension, needs, and preferences of potential participants. A critical influence on these outcomes is health literacy, the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.[i] Since 30% of US adults have only basic health literacy,