Number of Labs, NIH Grants and Publications

The graphs below are our attempt at measuring progress in the dysferlin field. The metrics depicted are the number of laboratories working on dysferlin, the number of grants awarded for dysferlin from the National Institutes of Health (NIH) 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 none of the metrics is perfect, we are encouraged that these indicators have been trending in the right direction.

The rise in the number of laboratories working on dysferlin from 1998 to 2011 was essential to expand the field’s knowledge base and increase the odds of hitting upon a therapeutically-relevant approach and resulted from several large requests for proposals by the Jain Foundation. Although the sharp increase in dysferlin researchers was not sustained, those continuing to work in the field are expert and make a greater and greater impact given the knowlege we have collected over time.

When the Jain Foundation was established, very few NIH research projects focused on dysferlin. Since the Jain Foundation was founded, more and more research projects have been focusing on dysferlin research.

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. In 2012, our Clinical Outcome Study and several contract research projects kicked off. We anticipate these longer term projects will signifcantly increase the number of publications on dysferlin in the coming year.