Figure 1.

Traditional research model. In this model, 1) Disease Research Organizations (DRO) first provide supportive resources to and raise money from patients and loved ones. 2) DROs also often refer patients to a few expert physicians, who collect clinical data and tissue samples. 3) With funding in hand, the DRO then places Request for Proposals (RFPs) and invites researchers to submit applications for funding. The researchers located at institutions that see the most patients clinically have access to essential tissue samples and clinical data, so they have the greatest likelihood of winning competitive grants. These individual researchers and the DRO grant review committee, thus, shape the research agenda for a given disease. Occasionally, pharmaceutical companies and governmental institutions fund DROs to distribute grants for research, but usually not until promising preliminary data has been generated.