The Base Model: Program Grants

While there is no single model of funding research, the most basic is the simple grant. For example, the Spinal Muscular Atrophy Foundation’s program grants can include basic, translational, and clinical research. Based on the project at hand, deliverables and milestones are established to ensure that all of the parties involved talk to one another. But these basic grants are themselves changing, and sometimes traditional academic contracts begin to look almost exactly like industry ones, said Joyce.

The Alternate Model: Fee-for-Service

When there are research needs that simply are not attractive to either academia or industry, a voluntary health organization has an opportunity to bridge this gap by paying for the work to be done on a simple fee-for-service basis. At the Spinal Muscular Atrophy Foundation, one such gap was the development of a viable screen assay, Enzyme-Linked Immunosorbent Assay (ELISA) for spinal muscular atrophy, a project that had languished in the academic community. “The best way to do it is with a contract research organization,” said Joyce. Fee-for-service contracts such as the Spinal Muscular Atrophy Foundation ELISA project are one of the most unique ways for a foundation like Colten to make a difference—by directly targeting a “dead zone” in the disease space and applying capital.

The discussion provided a good list of major issues covered in session two; these are summarized below (Box 2-1).

BOX 2-1

Key Points: Models for Building a Translational Research Program

  • Sometimes you need to spend time and energy testing various hypotheses in a methodical way.

  • Strong leadership with a broad vision and set of goals is essential.

  • If you have the scientific expertise and a broad view, then do not be afraid to lead the scientific research.

  • Expand the workforce pipeline by investing in researchers and their careers.

  • Try to strike a balance between researcher freedom and foundation accountability.

  • Be flexible in how you approach each project—not every project needs the same level of interaction and management.

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