We continue our series of reflections from the SCI Community on the NIH conference held this past February - SCI2020: Launching a Decade for Disruption in Spinal Cord Injury Research. Below is a recent interview Kate Willette and Matthew Rodreick conducted with Corinne Jeanmaire of the endParalysis Foundation in Europe. Corinne is a dynamic and vocal activist in the international SCI Community who sent an open letter to Lyn Jakeman at the NIH ahead of the conference detailing her concerns. Remember that if you were unable to attend SCI2020, you can stream the entire conference HERE and HERE.
The following interview took place over email and has been lightly edited for clarity.
Tell us about yourself: who you are, where you live, what you do, and why you do what you do.
I am a French woman living in the Netherlands. I have been a paraplegic since 2001. Having the full use of my arms and hands, I enjoy a relatively independent life. Many others have not been so lucky. We should think of them before saying how awesome wheelchairs and walking-assistance robots are. Many (very) young people have recently been told they would spend the rest of their lives depending on caregivers for each and every simple daily task. This is today’s situation and while we must accept it for the time being, we owe it to the younger generation to make use of all the tools at our disposal in order to try and create another future.
I am not a scientist, but I have been following SCI research for over a decade. I created the endParalysis foundation to act, in partnership with other bigger organizations and stakeholders, as a catalyzer for a more cure-driven research, mostly focusing on chronic SCI.
You took a big step last December and published an open letter to Lyn Jakeman of the NIH, one of the principal organizers of the gathering. Why did you write the open letter and what did you hope it would accomplish? Was it an effort to influence the NIH, the research community, the SCI community? Or all?
My own professional experience taught me that if you don’t ask the right questions, you are very unlikely to find the right solutions. When reading the agenda of the SCI 2020 meeting, it struck me that it was not representative of the SCI Community’s needs: innovative regenerative research in the context of chronic SCI was not on the agenda. Therefore, it seemed essential to re-iterate that chronic SCI patients do need quality-of-life improvements now, but also expect that innovative research is being conducted to reverse paralysis in the future. Compensatory measures and small improvements like the ones offered by robotics and e-stimulation are not enough. Especially if we are committed to introducing a decade of DISRUPTION in SCI research!
The open letter to the NIH aimed to influence the agenda as a way to improve the outcome of the meeting.
So, do you think that clear priorities have come out of the meeting?
I think the following items have been discussed but should be re-confirmed as priorities:
- a set of short term goals (quality of life, and making the best out of the currently available “treatments/tools.” The “low hanging fruits” (e.g. e-stim) should be tested in a coordinated and focused way, rather than ad hoc
- a set of medium-to-long term (i.e. disruptive) regeneration goals. A few partial recovery targets were mentioned as community priorities and could be started; these include: recovery of bladder, bowel and sexual function, hand and arm functions, etc. And when I allude to functional recovery here, I should emphasize that I do not mean a compensatory measure or device; but rather, a full motor and sensory recovery!
- on a structural level, a critical enabler needs to be acted upon. During the meeting, it was duly established that more focus should be put on chronic repair. Lyn Jakeman also recognized that the NIH only funded a low number of chronic studies, simply because most grant requests have an acute focus. As a result, countless studies don’t go through to the clinic, for all the reasons mentioned in our open letter. I believe that all funding bodies - including the NIH - can and should change that by using funding criteria such as clinical relevance and chronic focus.
Your letter mentions “an environment; an ecosystem and/or the setup of a flexible roadmap that will ease the development and testing of cutting-edge combination therapies…?” Can you describe in more detail what that environment/ecosystem might look like?
The environment I refer to would aim for a more business-like or/ goal-driven approach and could be introduced alongside the the NIH’s traditional grant system. It could include some of the following aspects:
- A goal-driven and integrative approach, from bench to market (multi-functional teams that include researchers, clinicians, patients and market representatives) to ensure the clinical and market relevance of research projects;
- Increased and optimized data sharing (both positive and negative results), in a virtual network/platform using modern digital technologies;
- The establishment of a flexible roadmap focusing on specific targets, such as:
- key functional recovery goals as mentioned earlier
- key enablers/accelerators such as an improved and standardized chronic animal model, better imaging, organoids, glial scar neutralization, motor-neurons replacement;
- A fast-track testing of combination therapies, guaranteeing both speed and safety;
- OUT OF THE BOX/“blue sky” approaches to explore breakthrough strategies. This could aim at, as mentioned by one researcher during the event, the "construction - instead of (re)construction - of circuitry.”
Realistically, there are quite a few roadblocks on the way: economic, IP related, legal and personal. However, launching/facilitating incentive prizes to support some of the above mentioned goals might be a relevant approach.
What were your impressions of the SCI 2020 Meeting, assuming you watched the event on the live-stream? Do you think that the organizers of the conference recognized your concern and addressed it? Why or why not?
The letter was given wide-spread social media coverage by the SCI Community and was shared with all the meeting participants. This led to a slight adjustment of the agenda. Also, based on the event live-stream, it seems to have increased the awareness of most meeting participants of the critical need for more focus on chronic SCI. This is a positive outcome but clearly, the intent statement should be followed by actions.
The disruption aspect was, in my opinion, not addressed. I understand that the conference was a preliminary step and that a lot of follow-up needs to be done. Therefore, I am eager to know what the next steps proposed by the NIH and other stakeholders are going to be and whether they will indeed take into account the community expectations.
What next steps would you take if you were in charge? What do you see as the role of our community in the project?
Now that the need for an increased focus on chronic regenerative research has been duly agreed during the meeting, I would ask the NIH (and other funding bodies across the world) to act upon that agreement by applying a funding criteria in favor of clinically relevant and chronic pre-clinical studies to obtain a fair balance between chronic and acute.
Secondly, since Lyn Jakeman said “the goal is really to NOT do things the way we used to do,” I would ask the NIH whether they consider facilitating the introduction of a more goal-driven environment, possibly under the form of a 3.0 project, to establish and implement a flexible roadmap to one or two key recovery goals for chronic SCI.
I believe that we, the SCI Community, are all "in charge" in a way. The least we can do is to increase awareness and to demand more focus on regenerative research for chronic SCI. And we can do much more.
Thanks again to Corinne for her thoughtful response to the SCI2020 conference.
Matthew Rodreick, Executive Director & Kate Willette, CureCast Host | Author
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