How individuals with spinal cord injury in the United States access and assess information about experimental therapies and clinical trials: results of a clinical survey

Background: Although many therapeutic approaches have been attempted to treat spinal cord injury, cellular transplantation offers the greatest promise in reconstituting the architecture of the damaged cord. Methods: A literature review was conducted to search for clinical trials investigating stem cells as treatment for spinal cord injury in the United States. Results: Overall, eight studies met inclusion criteria. Of the included studies, four were identified as being terminated, suspended, or not yet recruiting. Two studies were identified as currently recruiting, including one phase one trial evaluating stereotactic injections of human spinal cord-derived neural stem cells in patients with chronic spinal cord injuries, and one trial of transplantation of autologous bone marrow derived stem cells via paraspinal injections, intravenous injections, and intranasal placement. One study was identified as an active study, a phase one trial of intrathecal injection of 100 million autologous, ex-vivo expanded, adipose-derived mesenchymal stem cells. One trial that was listed as completed is a phase 1/2a, dose escalation study, investigating stereotactic injection of human embryonic stem cell derived oligodendrocyte progenitor cells. Conclusions: Although few significant publications have emerged to this point, current trial results are promising.

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Spinal cord injury trends in the United States, 1972–2017

Annals of Physical and Rehabilitation Medicine ◽

10.1016/j.rehab.2018.05.542 ◽

2018 ◽

Vol 61 ◽

pp. e234

Author(s):

Y. Chen ◽

H. Wen ◽

M. DeVivo

Keyword(s):

United States ◽

Spinal Cord ◽

Spinal Cord Injury ◽

The United States ◽

Cord Injury

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Greener on the other side? an analysis of the association between residential greenspace and psychological well-being among people living with spinal cord injury in the United States

Spinal Cord ◽

10.1038/s41393-021-00736-z ◽

2022 ◽

Author(s):

Lauren F. Murphy ◽

Claire Kalpakjian ◽

Susan Charlifue ◽

Allen W. Heinemann ◽

Mary Slavin ◽

...

Keyword(s):

United States ◽

Spinal Cord ◽

Spinal Cord Injury ◽

Well Being ◽

The United States ◽

The Other ◽

Psychological Well Being ◽

Cord Injury

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An Assessment of Which Sociodemographic and Spinal Cord Injury–Specific Characteristics Influence Engagement With Experimental Therapies and Participation in Clinical Trials

Topics in Spinal Cord Injury Rehabilitation ◽

10.46292/sci20-00070 ◽

2021 ◽

Vol 27 (4) ◽

pp. 28-39

Author(s):

Carlotta Pazzi ◽

Clara Farrehi ◽

Maclain Capron ◽

Kim Anderson ◽

Bonnie Richardson ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Clinical Trials ◽

Information Needs ◽

Online Survey ◽

Medical Center ◽

Bladder Function ◽

Cord Injury ◽

Experimental Therapies ◽

Trial Participants

Background: Although a number of experimental therapies for spinal cord injury (SCI) have recently emerged, few authors have examined the goals of individuals with SCI considering experimental therapies, and none have determined whether sociodemographic and injury-specific characteristics influence that engagement. Objectives: To determine (a) the goals of individuals with SCI who are considering experimental therapies; (b) whether sociodemographic factors, injury-specific characteristics, and concerns over adverse events influence those goals and/or participation in experimental therapies and clinical trials; and (c) whether people with SCI feel they have adequate information about experimental therapies and clinical trials. Methods: An online survey that yielded 364 responses. Results: Most respondents (83.7%) had sought information about experimental therapies, and just under half (47.8%) had received one. The most frequently cited functional goals were improvement in bowel and bladder function and elimination of dysreflexia (60.4%). Several goals were influenced by age and level and completeness of injury, and most respondents (93.4%) wanted more information about experimental therapies. Just over one-third (34.6%) of respondents had participated in a clinical trial, and nearly all (96.9%) wanted more information about them. Having received experimental therapies and participated in clinical trials was positively correlated with seeking SCI-specific care from an SCI specialist rather than from a primary care physician. Most (83.9%) respondents would avoid or be reluctant to engage with a medical center if they were made aware of harm done to trial participants. Conclusion: This work suggests that there are unmet information needs among people with SCI, specifically pertaining to experimental therapies and clinical trials. It also reveals that improved access to SCI specialists may enhance access to novel treatments and research efforts. Being made aware of harm to trial participants may influence the decision of individuals with SCI to seek care at or enroll in trials at these clinical sites.

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