Research Agenda: Guiding Principles

Certain principles underlie the manner in which ACCRF has developed the overall Research Agenda as well as the individual research projects:

• Venture Philanthropy Approach –The gaps in medical research are well known. Private firms do not find it financially rewarding, especially for rare diseases, to undertake the basic and pre-clinical translational research that eventually results in candidate drugs. Academic and government investigators receive less funding than pharmaceutical investigators and typically are less focused on developing novel treatments. ACCRF sees its role as a provider of seed capital to advance pre-clinical drug discovery and development to the point where clinical trials are supported by the National Institutes of Health (NIH) and private sponsors.
• Portfolio Management Perspective – ACC, like other cancers, is a varied and complex disease that will be understood more quickly by gathering together a wide variety of different perspectives. Rather than focus on just one approach, ACCRF seeks to build a diversified portfolio of promising research projects.  Each project represents one fragment in a mosaic that will create a clearer picture of ACC.
• Multi-Institutional Cooperation – No single institution has the resources or the expertise to carry out all the necessary research projects for ACC. The specimens and models are too rare, the technology platforms are too expensive, and the leading experts are too dispersed for any one institution to carry the burden alone. ACCRF’s greatest impact is in fostering multi-institutional collaboration.
• Proactive Project Selection – ACCRF is fortunate to benefit from the insights of an exceptional Scientific Advisory Board. It would be a waste of outstanding talent to limit its participation to the passive review of investigator-initiated proposals (the traditional model for most foundations in which researchers tell project funders what they would like to study). Instead, in consultation with top researchers from around the world, ACCRF’s Scientific Advisory Board proactively drives the Research Agenda, suggesting high-impact projects and identifying the leading researchers with the capacity and interest to carry them out. Certainly, ACCRF welcomes investigator-initiated proposals, but does not rely upon them as the primary engine of progress.

• Accelerating Practices –The need for rigor and validation in scientific research often obscures and occasionally blunts the sense of urgency among researchers. However, ACCRF believes that there are ways the research process may be accelerated responsibly:
• ACCRF pushes for rapid and wide dissemination of research findings to avoid unnecessarily duplicative work and to attract new researchers.
• ACCRF delineates expectations for deliverables and timeframes in each project and uses contracts in place of grants where appropriate.

Based upon these principles, and benefitting from the input of many researchers at numerous scientific meetings, ACCRF has created this Research Agenda. It is a living document that will change as circumstances and feedback warrant.