As a patient with spinal cord injury, with C1, C2, and C7 fractures with contusion of the medulla oblongata until the C2 vertebra, I have always felt lonely in my search for the right clinical trials in which I could participate. I believe it is important to have the opportunity to discuss treatment options and patients’ priorities on a regular basis with the treating neurologist or rehab ilitation physician. The possibility for research participation should be a normal part of these conversations. The pervasive culture that there will never be a cure for spinal cord injuries must change. I was surprised to read the statement of Tom Shakespeare and Nicholas Watson in The Lancet Neurology that making environments accessible or provid ing appropriate assistive technology would be more effective than trying to fix individuals with spinal cord injury. Assistive devices are a good option in the short term, but a spinal cord injury implies more problems than not being able to move. My assistive devices could not prevent my current need for haemodialysis. There is no cure for spinal cord injuries at the moment, but there is con tinuous progress in research. Although not all patients will be openminded towards research partici pation, all patients should be well informed about the possibilities to partici pate in methodologically sound clinical trials and the potential benefits and harms of clinical trial partici pa tion. We can not change the future with out research. Furthermore, making research parti ci pation discussable within standard consultations could pre vent patients from seeking unproven cell therapies abroad. When I speak to my health-care providers about participation in trials of functional electrical stimulation, a proven therapy to improve cardiovascular health in patients with spinal cord injury, I can perceive their skepticism in their eyes: why would you do this in your situation? But the only response I can think of is, why not? I would like to participate because I want to pre vent secondary complications from my spinal cord injury, I would like the feeling of movement, and I would like the idea of moving forward instead of resigning myself to my destiny. Furthermore, I want to be prepared for future therapies that might eventually restore part of the damage to my spinal cord. In 2018, several papers reported on the effectiveness of epidural stimu lation in patients with spinal cord injury. Although it is too early to integrate epidural stimulation into routine clinical practice, let’s not make the mistake of leaving the ther apy unavailable for a large part of the target population. It would be unethical to first cheer about a possible breakthrough for patients with a spinal cord injury and not make it available to try afterwards. We know it is not a cure, but until there is a cure, there are are many people who would be happy with small improvements. Not only is research participation imp ort ant, but also is the involvement of patients in determining research prior i ties. Benabid and colleagues have dis cussed the clinical application of a four limb exoskeleton controlled by a brain–machine interface. I do not know if there are many tetraplegic patients looking forward to the use of brain implants to control exoskeletons, which could risk their intellect. Braincontrolled exoskeletons are not a real cure in daily life, but they are in the same category as other less risky assistive technologies. Within a context of scarce financial resources, setting the focus on neuroplasticity and regeneration might be a better option.

中文翻译：

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脊髓损伤患者的研究参与

作为一名脊髓损伤患者，C1、C2 和 C7 骨折伴延髓挫伤至 C2 椎体，我一直在寻找可以参与的正确临床试验时感到孤独。我认为有机会定期与治疗神经病学家或康复医师讨论治疗方案和患者的优先事项非常重要。参与研究的可能性应该是这些对话的正常部分。脊髓损伤永远无法治愈的普遍文化必须改变。我很惊讶地阅读了汤姆·莎士比亚和尼古拉斯·沃森在《柳叶刀神经病学》中的声明，即让环境变得无障碍或提供适当的辅助技术比试图修复脊髓损伤患者更有效。从短期来看，辅助设备是一个不错的选择，但脊髓损伤意味着比不能移动更多的问题。我的辅助设备无法阻止我目前对血液透析的需求。目前还没有治愈脊髓损伤的方法，但研究不断取得进展。尽管并非所有患者都对参与研究持开放态度，但所有患者都应充分了解参与方法合理的临床试验的可能性以及参与临床试验的潜在益处和危害。没有研究，我们就无法改变未来。此外，在标准咨询中讨论研究参与可以防止患者在国外寻求未经证实的细胞疗法。当我与我的医疗保健提供者谈论参与功能性电刺激试验时，这是一种经过验证的改善脊髓损伤患者心血管健康的疗法，我可以从他们的眼神中看出他们的怀疑：在你的情况下你为什么要这样做？但我能想到的唯一反应是，为什么不呢？我想参加是因为我想预防脊髓损伤的继发性并发症，我喜欢运动的感觉，我喜欢向前而不是听天由命的想法。此外，我想为未来可能最终恢复部分脊髓损伤的疗法做好准备。2018 年，多篇论文报道了硬膜外刺激对脊髓损伤患者的有效性。尽管将硬膜外刺激纳入常规临床实践还为时过早，但我们不要犯错，让大部分目标人群无法使用该疗法。首先为脊髓损伤患者可能取得的突破而欢呼，然后不让它用于尝试是不道德的。我们知道这不是治愈方法，但在治愈之前，有很多人会对小的改进感到满意。不仅研究参与很重要，而且患者参与确定研究优先事项也很重要。Benabid 及其同事讨论了由脑机接口控制的四肢外骨骼的临床应用。不知道有没有很多四肢瘫痪的患者期待用大脑植入物来控制外骨骼，这可能会危及他们的智力。脑控外骨骼在日常生活中并不是真正的治疗方法，但它们与其他风险较小的辅助技术属于同一类别。在财政资源稀缺的情况下，将重点放在神经可塑性和再生上可能是更好的选择。