SCI 2020: Launching a decade for disruption in spinal cord injury research

Posted by Nurse Linda in Life After Paralysis on March 25, 2019 # Health, Research

In February, the National Institutes of Health (NIH) hosted a conference for researchers focused on spinal cord injury along with the SCI community. The NIH is a section of the U.S. Department of Health and Human Services that funds medical research. They set a research plan to organize experiments around a variety of medical conditions. This way, research is coordinated and shared publicly. Researchers can then work with each other’s results thereby making significant strides.

At this particular conference individuals, family members, and advocates in the community living with spinal cord injury and researchers working to develop treatments for spinal cord injury were brought together to exchange ideas. The goal was to make connections for a better understanding of what people in the SCI community need with researchers to direct their projects to fulfill those requests. The purpose of the conference was to review the state of the science today as well as to make the link between individuals, researchers, clinicians, and the community.

Please note, these are my views and interpretations of the meeting. Others might have viewed the proceedings differently depending on their frame of reference. I participated as a family member care provider, clinician, and researcher.

A review of the research to date demonstrates that activity is the key to recovery. Whatever you chose to call it, movement, exercise, activity needs to be a part of your life. This can be accomplished either by moving your body or having someone move it for you. This is not much of a surprise because everyone needs activity in their lives for better health regardless if you have a spinal cord injury or not. The evidence of healthcare research consistently cites activity as a key to physical and mental health.

A very moving presentation was made by a member of the community expressing fears due to SCI. These including dying, not getting to return to independence, being stuck in their current condition, getting sick, having urinary tract infections, kidney stones, and pneumonia. Also, missing out on life with family, friends and the impact SCI has on them. Statements were made about the lack of recreational activities tied with the research point of activity. This was a heartfelt summary of life with spinal cord injury. Reading this, you might be experiencing some of these same feelings. These are points that need to be considered by researchers in their studies.

Another interesting statement was made about community members want ‘scientists with them, not for them’. A subtle difference but important. Working together for success was the point as opposed to a researcher working on what they perceive is a need.

The call for a balance between acute and chronic SCI treatments was made. There is a perception by the community members that more emphasis is placed on acute injury over chronic injury, but it is unknown if this perception is a reality as the conference attendance had both acute and chronic researchers as well as representative from laboratory science and clinical researchers.

The science presented was broken down by research general study sections. First was a panel about research in the acute post-injury phase of SCI. The initial critical care and polytrauma of cellular response to injury were presented. Impressive findings include:

-The body has the capacity to undergo plasticity and repair (translated means potential for recovery).

-Research is indicating that bacteria and inflammation have an unknown control in making recovery happen. More detail in this area is needed.

-In the mouse, scientists have demonstrated that injured axons can grow through the spinal cord scar barrier. This is a huge discovery.

-Technological advances in invasive and non-invasive neuromodulation are ongoing (Internal and external treatments).

As far as repair, plasticity, and regeneration in acute and chronic periods, incomplete and complete injuries recover differently. Some people improve differently than others. This could be related to age, gender and other factors to be isolated. Tumors and maladaptive pathways of unknown origin cause different recoveries. Maximizing spared connections, the neuronal matrix, and chemoattraction is a point of further research to enhance nerve connections. In other words, recovery rates differ by types of injury, the cause of injury, and personal physical characteristics. Recovery treatments will need to be unique to the personal characteristics of the individual. A one size recovery method will probably not be the overall answer, but variations will be needed by the person.

Looking at past research that was started but then halted was presented, there are many devices that were flourishing about 20 years ago. Since they were developed by the private sector, return on the dollar was necessary for the inventing companies to continue. Unfortunately, private funding was not available in a sufficient manner to move these products along.

Past inventions included an implant in the arm to increase hand function in those with a higher level injury. Another product that was promising was an implant to empty the bladder, bowel and provide sexual function in men. This product did require severing of sacral nerves making it not favorable at the time. However, technology has advanced. The possibility of creating this product with electrodes attached to the sacral nerve, not severing it, is now possible. Reigniting the arm implant as an economically feasible study was proposed. People are looking for funding to rework some of these ideas.

Today, there are several products that can help people such as phrenic nerve stimulation for breathing to vibration therapy, and transcranial magnetic therapy to adjust the electrical flow of the spinal cord. However, these treatments are available either in limited geographical areas or do not have the approval of payors as a treatment.

Advancing these existing therapies is a priority. In addition, creating lasting and lifelong access to therapy is necessary especially in light of the need for activity to improve functional return. Also, there needs to be a push for more pediatric research. Most research is created for adults. Children have better recovery rates, but research does not greatly extend into the pediatric population mostly due to ethical issues.

In long term research for chronic spinal cord injury, secondary health conditions also need additional research. As inpatient rehabilitation days go down, secondary complications go up. Shoulder pain is an excellent example for individuals who propel their own chairs. Exercise to strengthen the shoulder, improving propelling techniques as well as equipment to take long term strain off the shoulder is needed but must be individualized for each person.

SCI is a systemic disease. Autonomic dysreflexia (AD) affects all organs and systems. Traditional AD symptoms are known but mostly center around the pounding headache as a chief sign. The effects of AD with minimal symptoms such as stuffy nose or visual disturbance are often overlooked. Silent AD (no symptoms at all) is not thoroughly understood. Research about how AD affects the body over the long term is an area for additional study. The Christopher & Dana Reeve Foundation AD wallet card will provide you with symptoms and treatment for AD.

Technology is currently one of the most quickly advancing research prospects. These projects include work in exoskeletons which are devices that fit on the outside of the body to facilitate movement by machine. They are currently quite cumbersome and expensive, so additional work is needed to decrease their size, weight, and expense. Brain-computer interfaces are still experimental. Brain-computer interfaces involve a chip inserted on the brain that connects to a computer. External headgear is being developed eliminating the need to have a craniotomy. Under study is electrical spinal cord stimulation, an implant on the spine to facilitate movement.

Needs in technology include individuality to assist with a person’s unique functional requirements. Technology advancements should be expanded for children. Providers need to be educated on how to use, prescribe, and repair equipment.

SCI is a relatively rare condition. Consolidation of services is needed to become cost-effective while increasing accessibility. Finally, the healthcare industry should be reformulated to include additional research into nerve repair. When one nervous system injury or disease is repaired, others can adapt the treatments and therapies to other nerve diseases.

Overall, SCI 2020 was a fabulous opportunity. Not only was the state of SCI research presented but the community of individuals with SCI was able to respond and react. The researchers were provided with real-life situations that will change their course of research to realize results in immediate needs.

Pediatric Consideration: In reading today’s blog, you will see notations about research being conducted for adults with spinal cord injury followed by a caveat about the lack of the same research in pediatrics. Research is conducted with any age person when it can be established that the benefit outweighs the harm to an individual. This is a challenge to researchers who need to establish safety in the laboratory and, often, in adults prior to translating research to pediatric needs. However, it must be noted that many researchers are conducting pediatric research mainly in academic medical centers with pediatric programs and through the Shriner’s Hospitals for Children. You can find current studies and the study results on their website. Even if you do not live close to a clinical trial site, or do not wish to participate in a clinical trial, you can obtain the outcome of the studies to discuss with your healthcare provider for treatment of your child.

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The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.