for spinal cord injury research, will facilitate increased participation in clinical trials, and will provide data sets that can be used for studies investigating the long-term treatment outcomes from therapeutic interventions and the safety of those interventions.
Neither the scientific community nor the community of individuals with spinal cord injuries is content with the limited therapeutic options currently available for the treatment of spinal cord injuries. There is an obvious and urgent need to identify and test new interventions and to accelerate the pace of research, particularly in moving laboratory findings to clinical practice. A spinal cord injury involves serious and traumatic adverse changes to the human body, and an extensive research effort is needed to develop treatment approaches for the range of health outcomes that individuals with spinal cord injuries face.
Challenges arise in dealing with new experimental therapies that look promising but that are not yet in clinical trials with human subjects. Some individuals are willing to take chances on interventions that may endanger their safety but that may also offer the possibility of functional improvements. Efforts are needed to assist these individuals in understanding the current status of clinical trials. This includes identifying those trials open for the recruitment of participants and providing information on the potential health risks of experimental therapies.
Recommendation 6.1: Facilitate Clinical Trials
Mechanisms should be implemented that will facilitate the implementation of clinical trials while observing the established standards for the protection of human subjects in clinical research, including:
Utilize and coordinate existing facilities and resources in acute care, chronic care, and rehabilitation to support multicenter clinical trials.
The use of central institutional review board mechanisms in conjunction with local institutional review boards should be explored to facilitate coordinated multicenter studies.
Patient registries and databases should be coordinated and expanded to improve mechanisms to conduct clinical trials and facilitate patient recruitment by increasing awareness of ongoing clinical trials among potential participants.
A set of standardized clinical outcome measures should be devel-