This article is part of the e-NABLE Emerging Infrastructure series, which will be released in the newsletter over the course of the next eight months.
There are dozens of academic articles written about e-NABLE and 3D printed prosthetics, but aggregate data on e-NABLE activity, and information about experience with e-NABLE devices after delivery to recipients is sorely lacking.
An e-NABLE Research Group led by Jen Mankoff of the University of Washington has now established an e-NABLE Human Subjects Research Pool, with approval from the UW Institutional Review Board. A week ago, EWC began inviting registered device recipients to make themselves available for researchers, and the pool has begun growing. The e-NABLE Research Group now has a web page at http://e-nable.org/spc/e-nable-research/ with links to information about the pool and guidance on developing and getting funding for research proposals (whether undertaken by academics or by citizen-scientist e-NABLErs).
A note from the author
The first (and until now, last) edition of our newsletter came out last July. It included my essay “e-NABLE at 4 and 10,000: Now what do we do?” It summarized our history and hinted at our future:
The traditional organizational response to growth is to develop hierarchical authority structures…and become a traditional organization. We tried that once; we might try it again. But maybe–and this is what I am most excited about–maybe we can thrive by embracing the fact that we are not a traditional organization.
e-NABLE is now a network, not just of passionate individuals, but of “chapters” in over 80 countries. Chapters are large enough to make a real difference, but small enough to empower individual members, cultivate mentors and leaders, and organize themselves as they see fit. Because they are localized and diverse, chapters can develop locally appropriate solutions and specialties. And with the right infrastructure of “internet communications, 3D printing, and good will,” chapters can complement each other and share stories, solutions and values.
What kind of infrastructure do we need? An infrastructure that supports and develops autonomous chapters unified by shared values and shared designs while supporting collaboration, innovation, sustainability, and collective intelligence among individuals and chapters.
Six months later, that infrastructure is emerging. In this series, I want to document and highlight components of our infrastructure that are visible and active, albeit incomplete. Because we’ve learned that false expectations can be toxic, I’m resisting the urge to highlight out other exciting components in e-NABLE “skunkworks” that are not yet “open for business.”