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Chairman of the Board, Luke Evnin, at Cool Comedy Hot Cuisine, 2018
From basic research to pharmaceutical pursuit of novel drugs for scleroderma (and its associated organ-specific impact), 2018 has been an especially significant year for the scientific community. The progress of the SRF’s funded programs has been particularly substantial, and we continue to have an impact that belies the size of our investment.
Our most noteworthy achievement this year has been the launch of CONQUER, a first-of-its-kind longitudinal registry that will collect and chart the trajectory of disease burden across thousands of scleroderma patients. CONQUER, which stands for “COllaborative National QUality and Efficacy Registry,” recently began enrolling scleroderma patients through a network of 12 founding sites across the United States. The project aims to determine which disease features are associated with or predict outcomes, identify patients requiring early/aggressive intervention–as well as those to watch–and, among other goals, drive more personalized and effective therapy for patients. The enthusiasm across the research and clinical community for this effort is palpable. Not only will the resultant database be the gold standard, but the effort involved in assembling the network will in and of itself reap many benefits. We envision that this network will be the core for running trials to examine better therapeutic strategies, for example. We are seeking support from a wide range of sources, including a range of industry partners. Their willingness to participate has been gratifying, and the opportunity to build a public-private partnership is also an exciting extension of CONQUER. In short, I am confident that the results of such a widespread, comprehensive study will make a positive impact in the scleroderma research field.
CONQUER is not the only example of the collaborative, community-wide research that the SRF has funded and actively fostered: Funded Investigators Kastner, Wigley, and Boin have continued to advance the effort on Genome Research in African American Scleroderma Patients (GRASP). GRASP is a collaboration among 23 different scleroderma centers across the country and is anchored by DNA analysis at the National Human Genome Research Institute, and clinical data analysis at Johns Hopkins University School of Medicine. The project has sequenced DNA and collected clinical data on over 1300 African-American scleroderma patients. In the four years since we began GRASP, it has become a scleroderma community research resource, and is on track to substantially impact scleroderma research as it currently stands. A number of publications have already been released as a result of the study, including a clinical overview by Dr. Nadia Morgan, et. al.
Finally, the SRF’s commitment to finding a cure encompasses not only funding the most promising scleroderma research, but also ensuring that that research is developed and turned into usable treatments and therapies for scleroderma patients. With that in mind, we are excited to announce that the drug derived from the work of Dr. Hal Dietz on inhibiting, preventing, and even reversing fibrosis–which formed the basis of the bio-pharmaceutical company Blade Therapeutics–has entered into clinical trials and will begin dosing patients in phase 2 trials early in 2019. We remain extremely optimistic that Blade’s efforts will prove out the novel disease mechanism identified by Dr. Dietz, who is funded by the SRF. If successful, the trial would lead to a new therapy, which we hope will be the first ever disease-modifying therapy.
The SRF is still a small team–in addition to our Board of Directors, Scientific Advisory Board, and Funded Investigators, our San Francisco office is comprised of five tireless employees who are committed to our efforts. We are small; but we are mighty. We have achieved so much with the help of our partners, volunteers, events, and, you, our generous donors. On behalf of all of us, I would like to thank you for all of your support–it is due to your contributions that we have arrived where we are today, and that we are able to continue to move onward and upward.
Luke Evnin, PhD
Chairman of the Board