(Pictured from left to right: Stanley Nelson, MD, Center for Duchenne Muscular Dystrophy at UCLA, Thomas Sugar, PhD, Arizona State University Polytechnic School, Tom Egan, SRI International, Roy Kornbluh, SRI International, Laura Case, DPT, Duke University School of Medicine, Keith Van Houten, Annie Kennedy, Parent Project Muscular Dystrophy, Matt Arnold, Solid Ventures, Lee Sweeney, PhD, University of Pennsylvania, Tina Duong, DPT, Children's National Medical Center, Annie Ganot, Ilan Ganot, Solid Ventures, Eytani Ganot, Andrey Zarur, PhD, Solid Ventures, Brenda Wong, MD, Comprehensive Neuromuscular Center, Cincinnati Children's, Rich Mahoney, SRI International, Gilad Hayeem, Solid Ventures, Elliott Rouse, PhD, Rehabilitation Institute of Chicago, Joel Schneider, PhD, Solid Ventures)
It was a bit like being in the midst of a dream. You are seated at a table, looking out high above a river. Surrounding you are some of the world’s top experts in Duchenne who are discussing their ‘wish lists’ for what a wearable assistive device would do for boys and men with Duchenne and Becker, if it were to be invented. Mixed among these Duchenne clinical and research experts are really smart and talented engineers. Engineers who don’t yet know Duchenne – but who are learning rapidly, are asking questions and taking notes, and are passionate. This team of engineers are world experts in creating robotics, wearable technologies, and rehabilitation products. It is a passionate and productive exchange, and what yields is a plan and a partnership.
But instead of waking up, you get on a plane and return home. Because this wasn’t a dream, it was the formalization of a project that was actually conceived of weeks before by a father of a young man in our community. That father – who is also an engineer - did his research and brought his idea to Solid Ventures. The idea was the apply military robotic technology to our community. Together they did more research – and then brought the idea to PPMD. What has quickly evolved is a collaboration to develop the Solid Suit. This collaboration will require involvement from our entire community and we will come to you with opportunities to participate in its development and provide input over the coming weeks and months. And while we don’t yet know whether this vision will work for people with Duchenne and Becker, we do know that we have the world’s best team working on it as quickly as possible – and it is being driven by powerful collaboration between two partners (PPMD and Solid Ventures) who will leave no stone unturned. So, for today…
When a passionate and talented group of people gather, combine forces, and focus entirely on the shared goal of enhancing strength for people with Duchenne and Becker, you don’t have to be asleep to dream.
So, what happens when our Duchenne community led by PPMD, Solid Ventures, and the SRI International team applies military engineering and robotics technology to optimize muscle function and strength?
We don't yet know, but we're about to find out.
What is the Solid Suit?
The Solid Suit is envisioned to be a soft, wearable, assistive device for people with Duchenne and Becker muscular dystrophy. Conceptually, it could be worn under one’s clothing – next to his/her skin (picture Spiderman’s suit). It is not yet known whether the project will yield a full body suit, an upper body suit to enhance upper body function, or a lower body suit to enhance lower limb function and mobility. PPMD and Solid hope the Solid Suit will enable patients to use a device in their day-to-day activities that assists in muscle function and perhaps helps muscle preservation.
Feasibility of the Solid Suit concept will be determined throughout Phase I of the project and through the assessment of the SRI International team and the Solid Suit Steering Committee.
What is the anticipated timeline for development of the Solid Suit?
The Solid Suit Project has been divided into 3 phases, with a “go/no-go” decision to move forward scheduled to take place at the end of Phase I. Phase I of the Solid Suit Project is scheduled to take 4 months. Phase I launched at the beginning of December. At the end of Phase I, the engineering experts at SRI will make recommendations to the Steering Committee as to the feasibility of the overall project. If it is determined that the project is to move forward, assessments as to which specific functions the initial product will be designed to address will be made. All 3 phases of the Solid Suit project are anticipated to be completed within 12 months.
Please note: This does not mean that a wearable assistive device will be commercially available within a year. It is hoped that in 12 months, a prototype that enhances function could be achieved.
How is the Solid Suit being developed?
The Solid Suit idea evolved from cutting-edge military technology designed to offset muscle fatigue and augment muscle strength. Research performed with Duchenne clinicians and the patient community will guide both prototype and clinical development with the goal of ensuring widespread access of patients to the technology. The partnership between PPMD and Solid Ventures took shape after a small and diverse group, comprised of the world’s most renowned robotics engineers and Duchenne experts, convened to assess the concept’s feasibility and applicability to the Duchenne community.
What is the Solid Suit Steering Committee?
The Solid Suit Steering Committee is comprised of 5 individuals: Ilan Ganot representing Solid Ventures, Annie Kennedy, representing PPMD, and three outside experts. They include Tina Duong, DPT, a Research Physical Therapist from Stanford University School of Medicine who has strong expertise in DBMD; Stan Nelson, MD, a geneticist, the Co-Director of the Center for Duchenne Muscular Dystrophy at UCLA, and the father of a young boy with Duchenne; and Keith Van Houten, an engineer at GM and father of a young man in our community. Keith was also the innovator who initially conceived this project, worked closely with Solid in selecting the world’s top engineering group to entrust with the effort, and helped to form the early stages of the collaboration between PPMD and Solid.
Which members of the Duchenne/Becker community could potentially benefit from the Solid Suit? Younger individuals? Older individuals? Ambulatory individuals? Non-ambulatory individuals?
Conceptually, the Solid Suit could have benefit and applicability to any member of the Duchenne/Becker community. What we don’t currently know is whether this project will yield a suit that is worn on the lower body that is intended to enhance ambulation, or a suit that is worn on the upper body that can enhance reach and access to work space, or whether a full body suit will be developed. It is also possible that Phase I could determine that the application of this technology is not beneficial for our community. But we are hopeful that it is, and we have the world’s top engineers working on our behalf to help us figure it out. And since the project timeline is aggressive, we will have an answer within a year.
Can the Duchenne community be involved in the development of the Solid Suit?
Yes! This is a critically important aspect of this program. To ensure that the engineers and robotics experts at SRI have an intimate understanding of the needs of our community, PPMD will be seeking community input on the Solid Suit project several times throughout the coming months. The first opportunity to contribute will be a survey that will be distributed by PPMD in the end of January and will provide direct input to the design of the Solid Suit. The survey will be distributed via a PPMD email blast and will also be available on PPMD’s community pages and FB site.
Are clinical trials of the Solid Suit anticipated?
Based on the type of product being developed and the approval pathway anticipated, it is expected that clinical trials of the Solid Suit will not be needed.
Are there potential applications for the Solid Suit for use within clinical trials?
While not the primary purpose of the Solid Suit development, once it is developed we expect to explore whether sensors integrated into the suit can record activity or other information that can be useful to conducting trials or measuring efficacy.
If the Solid Suit project is successful, how much will it cost and will it be a product covered by health insurance companies?
There are still many unknowns related to this project. Is our plan to pursue a payer approval pathway for the Solid Suit. With that said, if the Solid Suit is to become a reality as is hoped, it could be conceivable that there would be a period of time when the product could be available for direct purchase, prior to when it is accepted for coverage and reimbursement by payers (Medicaid and insurance companies). Ensuring that this product enters the market at an affordable price point is a goal that everyone involved in the development of this product shares. Just as we envision a product that is eventually applicable to individuals across the spectrum of disease progression within our community, we strive to ensure that it is an affordable product across our community.
There are a number of different robotic exoskeletons currently being designed for and utilized by members of our community. How does the Solid Suit project align with those efforts?
There are a number of robotic concepts currently being applied to our Duchenne/Becker community, and the potential they each have to enhance and optimize function is tremendous. The Solid Suit differs in that it isn’t an exoskeleton that includes bulky hardware or requires mounting on other devices. The objective is to create a lightweight, wearable device that is quiet, unobtrusive, and easy to use.
The Solid Suit project does not duplicate other robotic efforts. It is another unique strategy, and both PPMD and Solid believe in investing in as many promising opportunities to impact quality of life and end Duchenne as possible.
Why was SRI International selected?
As an organization, SRI is positioned at the leading edge of applied research, and has a long track record of transitioning new technologies into real products. The SRI robotics program has developed new technologies for wearable robotics, as part of its participation in the DARPA Warrior Web program, that appear to be well aligned with the requirements of the Solid Suit. In addition, SRI has technical expertise in robotics and wearable technology, as well as expertise in healthcare and rehabilitation product development, essential to manage this project from start to finish.
PPMD will provide you with regular updates on the Solid Suit as they become available.