Progress Metrics: Collaborations

Collaborations in the dysferlin field

Academic scientists are evaluated and rewarded based on being the "first to publish." Publishing translates into receiving funds from the NIH more easily and securing tenure at a university. Unfortunately, the path of translating basic research findings into clinically-relevant therapies is long and inherently collaborative, with limited opportunity for high-profile publications for individual scientists. Thus, the publication-based reward system for individual rather than collective achievement stifles collaboration and slows the development of therapies.

Collaboration is particularly important for rare disease research where scientific tools and techniques are lacking and fundamental information is fragmentary. At first, the Jain Foundation's efforts to mediate collaborations were met with resistance as researchers were wary of sharing their ideas and reagents with potential competitors. The only way to break this barrier was to make our funding contingent on collaboration. However, over time we have gradually gained the scientists’ trust by demonstrating our detailed, comprehensive and current scientific knowledge of the dysferlin field and our firm commitment to protecting their intellectual property. Our deep understanding of the science allows us to identify synergies between projects and pair them together in a way that produces more insightful results than either laboratory would be able to achieve on its own in a reasonable time frame.

The chart below shows many of the collaborations that the Jain Foundation has fostered between different dysferlin research groups worldwide. The graph is not exhaustive and only represents collaborations directly enabled by the Foundation. The grey lines represent unidirectional sharing of research tools or protocols between investigators that saved significant time and money for the receiving laboratory. The red lines highlight deeper, bidirectional collaborations between groups with complementary expertise. These deeper collaborations have often lasted for multiple years and resulted in a meaningful publication.