DISRUPTION: GIVE SCI RESEARCH A CHANCE TO CURE PARALYSIS?

A few thoughts shared by Corinne Jeanmaire (@endParalysis foundation) with U2fP.org about priorities, disruption strategies in regenerative spinal cord injury research...

Interview made by U2FP.org, per email, in March 2019, for their newsletter.

Abstract. See full article here

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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 [SCI 2020 - Decades of disruption in spinal cord injury research] 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 NIH’s traditional grant system. It could include some of the following aspects:

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