Number of Labs and Publications

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The graphs to the right are our attempt at measuring progress in the dysferlin field. The two metrics depicted are the number of laboratories working on dysferlin and the number of peer-reviewed papers published on dysferlin. Data are shown starting in 1998, the year the dysferlin gene was identified as the gene responsible for this disease. The year when the first functional information (involvement in repair of muscle cell membranes) about dysferlin was discovered (2003), and the year in which the Jain Foundation arrived on the scene (2005) are also marked.

Although neither of the two metrics is perfect, we are encouraged that these indicators are trending in the right direction. For example, the steady rise in the number of laboratories working on dysferlin is essential to expand the field’s knowledge base and increase the odds of hitting upon a therapeutically-relevant approach. To maximize returns from this expanding knowledge base, it must be shared in a timely fashion so that all dysferlin researchers have the opportunity to "connect the dots" and adjust their own research accordingly. Tracking dysferlin-related publications is one way to measure the sharing of knowledge, but it is problematic because publications only reflect successful completed research projects, and not approaches that were "tested and ruled out," which is also an important result that should be shared with the research community. In addition, there is typically a 3 to 5 year lag between the initiation of a research project and its published outcome. Nevertheless, barring the ultimate goal of finding a cure for the disease, published papers currently remain the only tangible means of measuring the “success” of a research project.