SPORE Patient Advocates Contribute in the Following Ways
- Participate in research discussions and strategy meetings
- Ask result-oriented questions that help SPOREs focus on ways to move discoveries toward clinical applications for people
- Facilitate discussions among disparate scientific disciplines to create collaborations
- Serve on SPORE executive committees
- Help review small, "seed" grants that SPOREs can fund
- Help identify gaps & barriers in the research system, and facilitate discussions with federal agencies, national organizations, and companies and institutions to streamline the discovery-development-delivery process
- Learn why tissue is important to researchers and patients, and help researchers get what they need while respecting privacy issues
- Improve tissue consent and collection processes
- Review surveys, instruments, consents, websites, projects, and cores
- Serve on local Institutional Review Boards
- Bring awareness of the SPORE program and its clinical trials to patient and community organizations
- Hold educational forums between patient & research communities
- Brainstorm on ways to improve the clinical trial system for participants
- Give input into clinical trial development and design
|
