Redefining clinically meaningful improvement in traumatic cervical spinal cord injury: a participant-centered perspective from community feedback sessions

Through a structured engagement initiative, the North American Spinal Cord Injury Consortium (NASCIC) consolidated perspectives from individuals with traumatic cervical spinal cord injury (SCI) regarding recovery priorities and the impact of functional gains on daily life. This exploratory outreach effort utilized the NASCIC network to capture community insights with respect to the development of targeted SCI therapies. The group represented a diverse range of lived experiences, with a median time since injury of 12 years (range 4–38). The group distribution (60% AIS A; 40% AIS B) ensured that insights captured the specific challenges of both complete and incomplete high-cervical injuries. Hand/arm function, bowel/bladder control, and trunk stability consistently emerged as top priorities, with participants emphasizing that even small improvements in these areas can be transformative for independence, caregiver burden, and emotional well-being. These insights challenge the traditional regulatory, clinician, and academic focus regarding large, functionally transformative improvements as the sole marker of clinical benefit. The findings support adopting a broader, participant-centered definition of clinically meaningful improvement in SCI and the use of outcome measures that reflect real-world priorities. Barriers to clinical trial participation and evolving expectations post-injury further highlight the need for patient-centered outcome measures and ethical, accessible trial design. Prioritization of participant-centered endpoints and addressing practical barriers to clinical trial participation should be considered in future research.