On Mar. 11-12, the researchers who form the inaugural Research Institute Without Walls (RIWW) were led by scientific director Suzanne Vernon, PhD and CEO Kim McCleary in detailed discussions about each of the research projects and integration of efforts through the data-sharing platform REDCap. Each of the principal investigators had the opportunity to present their research plans and receive constructive feedback from colleagues with the goal of optimizing protocols before the studies begin. We look forward to sharing more information about these studies, the RIWW and progress as the projects get under way. As you can tell from feedback we received from participants (below), it was a great meeting and a great launch! Thank you to Catalyst Fund donors who made it possible!
“I am very excited about having a unified platform that can be used by CFS investigators to compare, share and collaborate research information. This has the potential to overcome one of the main limitations we have had to deal with in CFS research, the fact that it is likely that there are more than one cause for CFS, and research reports include relatively small number of patients because of limited financial support. Using REDCap as a common research database will compile research patient data (stripped of personally identifying information) and provide the opportunity to advance our understanding of CFS.”
Italo Biaggioni, MD
(Member of the Association’s Scientific Advisory Board)
“By the end of the meeting, I had a much better understanding of the philosophy behind the ‘research institute without walls’ approach and it increased my already high level of enthusiasm for both my project and potential collaborative opportunities. I was really impressed with the level of coordination by CFIDS and the breadth of the studies that were judged to have the merit and mission that CFIDS envisioned. Funded projects covered an impressive array of systems from epigenomic analyses to large database algorithms targeted at novel drug applications.”
Dane Cook, PhD
University of Wisconsin-Madison
“Thank you for organizing this fascinating kick-off meeting. Biovista’s project is about integrating the existing knowledge and diverse views on the pathophysiology of CFS, to arrive at novel opportunities for disease-modifying and/or symptomatic treatments. I was excited to see that the other CFS-funded projects were carefully selected so as to further elaborate on such diverse views: autonomic dysfunction, post-exercise physiology, inflammatory and other biomarkers, brain functioning. I am looking forward to learning the results of those projects as they are produced and to incorporating them in our drug repurposing approach to CFS. I was impressed by the determination of my fellow investigators to expanding our understanding of CFS and by the commitment of the group to improving the quality of life for these patients. In a future meeting of the group, I will be very interested to hear about any preliminary results that could help us steer our own research better. I believe that the research institute without walls is a very flexible and efficient way to advance research on CFS and to channel every penny where it counts the most.”
Spyros Deftereos, MD
“I was excited to have the opportunity to interact with the other researchers at the recent meeting. In particular, Dean Cook’s research is very complementary to the approaches my lab will use, and I believe there is substantial opportunity for collaboration with him. The feedback I received from the Biovista group will help refine our initial approach and increase the power of our ultimate analysis. So I think the Association’s focus on ‘research institute without walls’ is innovative and forward thinking. As the CFIDS Association is well aware, it is no longer the case that we are limited in science to collaborations with local colleagues. CFS is a world-wide problem that requires world-class research. What is most powerful is when researchers with intersecting approaches can offer informed feedback at the ‘macro’ level on the research question as well as the ‘micro’ level of technical detail. I look forward to future meetings in which we discuss preliminary data.”
Patrick McGowan, PhD
University of Toronto
“What excites us about the CFIDS project is the dedication and deep knowledge that the CFIDS team brings to bear on a rather challenging opportunity. We look forward to using not only the CFIDS but also all the other project teams as a ‘sounding board’ for our findings and as a resource that will ‘modulate’ our own output.
“But it is not just that: at the kick-off meeting we felt extreme openness and willingness to share data and results, we felt the empathy in the voices of all investigators and even more so in our CFIDS Association partners, and we saw a clarity in the Association’s goals and a plan for the collective work that are very energizing. The ‘research institute without walls’ makes absolute sense to a company that uses an outsourcing model for its business and that emphasizes in its own approach links between seemingly disparate, but ultimately related, pieces of work: spend our collective valuable resources on results, not on bricks and mortar.
“We see a very useful complementarity in the projects selected that addresses three issues in parallel: (a) four projects to understand the biology and physiology of CFS, (b) one project on infrastructure to allow the collection, analysis and sharing of data produced and (c) one project to hopefully find therapies for CFS, in whole or in part.
“For our next meeting we shall be looking forward to initial results or progress and, more importantly, requests for input amongst partners. We will be looking for the ‘glue’ that will effectively combine our individual efforts into one ‘big punch.’ If all goes according to plan, at the end of this round of projects, we will have collectively moved the bar forward. This alone is a worthy goal and for Biovista, a very exciting prospect indeed.”
Andreas Persidis, PhD
“The small size of the meeting allowed us to dig down and bring closer scrutiny to the study methods than often occurs at larger meetings. We all got lots of thoughtful and collegial feedback from the other investigators. Beyond that, the differing scientific backgrounds and interests in the room meant that our discussions had to cross the usual borders between disciplines. For example, Spyros Deftereos was there to speak about drug discovery, but wearing his other hat as a clinical neurologist, he was also able to offer some excellent insights about our work on neuromuscular strain as a contributor to sensitivity in the nervous system.
“From my perspective, the ‘research institute without walls’ approach is already bringing an infusion of new ideas, new methods, and new investigators to the CFS stage. Patrick McGowan’s epigenetics work takes us in a novel direction, as does the drug repurposing work. I’m looking forward to seeing the projects evolve and discussing more of the preliminary data at the next meeting. This was a fantastic start.”
Peter Rowe, MD
Johns Hopkins Children’s Hospital
(Editor’s Note: Dr. Marvin Medow was unable to provide a quote by press time due to the serious illness then death of a family member. We’ll add his remarks as soon as he’s able to share his thoughts about the meeting.)