{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T17:41:04Z","timestamp":1790444464979,"version":"4.1.0"},"reference-count":88,"publisher":"American Spinal Injury Association","issue":"4","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021]]},"abstract":"<jats:p>\n                    <jats:bold>Background:<\/jats:bold>\n                    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.\n                    <jats:bold>Objectives:<\/jats:bold>\n                    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.\n                    <jats:bold>Methods:<\/jats:bold>\n                    An online survey that yielded 364 responses.\n                    <jats:bold>Results:<\/jats:bold>\n                    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.\n                    <jats:bold>Conclusion:<\/jats:bold>\n                    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.\n                  <\/jats:p>","DOI":"10.46292\/sci20-00070","type":"journal-article","created":{"date-parts":[[2021,11,18]],"date-time":"2021-11-18T17:09:18Z","timestamp":1637255358000},"page":"28-39","source":"Crossref","is-referenced-by-count":5,"title":["An Assessment of Which Sociodemographic and Spinal Cord Injury\u2013Specific Characteristics Influence Engagement With Experimental Therapies and Participation in Clinical Trials"],"prefix":"10.46292","volume":"27","author":[{"given":"Carlotta","family":"Pazzi","sequence":"first","affiliation":[{"name":"Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clara","family":"Farrehi","sequence":"additional","affiliation":[{"name":"Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maclain","family":"Capron","sequence":"additional","affiliation":[{"name":"Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kim","family":"Anderson","sequence":"additional","affiliation":[{"name":"MetroHealth Medical Center of Case Western Reserve University School of Medicine, Cleveland, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bonnie","family":"Richardson","sequence":"additional","affiliation":[{"name":"Sequim, Washington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael","family":"Stillman","sequence":"additional","affiliation":[{"name":"Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"25425","reference":[{"issue":"4","key":"i1082-0744-27-4-28-b1","series-title":"Ann Phys Rehabil Med","first-page":"225","article-title":"Transcutaneous electrical spinal-cord stimulation in humans","volume":"58","year":"2015","unstructured":"Gerasimenko\n              Y,\n            \n            \n              Gorodnichev\n              R,\n            \n            \n              Moshonkina\n              T,\n            \n            \n              Sayenko\n              D,\n            \n            \n              Gad\n              P,\n            \n            \n              Reggie Edgerton\n              V.\n            \n          \n          Transcutaneous electrical spinal-cord stimulation in humans.\n\t\t\t\t\tAnn Phys Rehabil Med.\n\t\t\t\t\t2015;\n\t\t\t\t\t58(\n\t\t\t\t\t4):\n\t\t\t\t\t225\u2013\n\t\t\t\t\t231.\n\t\t\t\t\tdoi: S1877-0657(15)00077-9 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Neurosurg.\n\t\t\t\t\t2018;\n\t\t\t\t\t13(\n\t\t\t\t\t3):\n\t\t\t\t\t656\u2013\n\t\t\t\t\t659.\n\t\t\t\t\tdoi:10.4103\/ajns.AJNS_259_16[doi]."},{"issue":"10","key":"i1082-0744-27-4-28-b11","series-title":"J Neurotrauma","doi-asserted-by":"publisher","first-page":"1371","DOI":"10.1089\/neu.2004.21.1371","article-title":"Targeting recovery: Priorities of the spinal cord-injured population","volume":"21","year":"2004","unstructured":"Anderson\n              KD.\n            \n          \n          Targeting recovery: Priorities of the spinal cord-injured population.\n\t\t\t\t\tJ Neurotrauma.\n\t\t\t\t\t2004;\n\t\t\t\t\t21(\n\t\t\t\t\t10):\n\t\t\t\t\t1371\u2013\n\t\t\t\t\t1383.\n\t\t\t\t\tdoi:10.1089\/neu.2004.21.1371[doi]."},{"issue":"9","key":"i1082-0744-27-4-28-b12","series-title":"Spinal Cord","doi-asserted-by":"publisher","first-page":"526","DOI":"10.1038\/sj.sc.3101638","article-title":"Survey of the needs of patients with spinal cord injury: Impact and priority for improvement in hand function in tetraplegics","volume":"42","year":"2004","unstructured":"Snoek\n              GJ,\n            \n            \n              IJzerman\n              MJ,\n            \n            \n              Hermens\n              HJ,\n            \n            \n              Maxwell\n              D,\n            \n            \n              Biering-Sorensen\n              F.\n            \n          \n          Survey of the needs of patients with spinal cord injury: Impact and priority for improvement in hand function in tetraplegics.\n\t\t\t\t\tSpinal Cord.\n\t\t\t\t\t2004;\n\t\t\t\t\t42(\n\t\t\t\t\t9):\n\t\t\t\t\t526\u2013\n\t\t\t\t\t532.\n\t\t\t\t\tdoi:10.1038\/sj.sc.3101638[doi]."},{"issue":"22","key":"i1082-0744-27-4-28-b13","series-title":"Disabil Rehabil","first-page":"1381","article-title":"Health problems of persons with spinal cord injury living in the Netherlands","volume":"27","year":"2005","unstructured":"Bloemen-Vrencken\n              JH,\n            \n       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Cord.\n\t\t\t\t\t2011;\n\t\t\t\t\t49(\n\t\t\t\t\t1):\n\t\t\t\t\t49\u2013\n\t\t\t\t\t54.\n\t\t\t\t\tdoi:10.1038\/sc.2010.94[doi]."},{"issue":"7","key":"i1082-0744-27-4-28-b23","series-title":"Neural Regen Res","doi-asserted-by":"publisher","first-page":"1153","DOI":"10.4103\/1673-5374.160112","article-title":"Outcomes of bowel program in spinal cord injury patients with neurogenic bowel dysfunction","volume":"10","year":"2015","unstructured":"Ozisler\n              Z,\n            \n            \n              Koklu\n              K,\n            \n            \n              Ozel\n              S,\n            \n            \n              Unsal-Delialioglu\n              S.\n            \n          \n          Outcomes of bowel program in spinal cord injury patients with neurogenic bowel dysfunction.\n\t\t\t\t\tNeural Regen Res.\n\t\t\t\t\t2015;\n\t\t\t\t\t10(\n\t\t\t\t\t7):\n\t\t\t\t\t1153\u2013\n\t\t\t\t\t1158.\n\t\t\t\t\tdoi:10.4103\/1673-5374.160112[doi]."},{"issue":"4","key":"i1082-0744-27-4-28-b24","series-title":"Arch Phys Med Rehabil","first-page":"501","article-title":"Chronic pain associated with spinal cord injuries: A community survey","volume":"82","year":"2001","unstructured":"Turner\n              JA,\n            \n            \n              Cardenas\n              DD,\n            \n            \n              Warms\n              CA,\n            \n            \n              McClellan\n              CB.\n            \n          \n          Chronic pain associated with spinal cord injuries: A community survey.\n\t\t\t\t\tArch Phys Med Rehabil.\n\t\t\t\t\t2001;\n\t\t\t\t\t82(\n\t\t\t\t\t4):\n\t\t\t\t\t501\u2013\n\t\t\t\t\t509.\n\t\t\t\t\tdoi: S0003-9993(01)13197-7 [pii]."},{"issue":"1","key":"i1082-0744-27-4-28-b25","series-title":"Spinal Cord","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1038\/sj.sc.3100523","article-title":"Pain following spinal cord injury","volume":"36","year":"1998","unstructured":"Demirel\n              G,\n            \n            \n              Yllmaz\n              H,\n            \n            \n              Gen\u00e7osmano\u011flu\n              B,\n            \n            \n              Kesikta\n              N.\n            \n          \n          Pain following spinal cord injury.\n\t\t\t\t\tSpinal Cord.\n\t\t\t\t\t1998;\n\t\t\t\t\t36(\n\t\t\t\t\t1):\n\t\t\t\t\t25\u2013\n\t\t\t\t\t28.\n\t\t\t\t\tdoi:10.1038\/sj.sc.3100523[doi]."},{"issue":"5","key":"i1082-0744-27-4-28-b26","series-title":"Spinal Cord","doi-asserted-by":"publisher","first-page":"320","DOI":"10.1038\/sj.sc.3100540","article-title":"Aging and life adjustment after spinal cord injury","volume":"36","year":"1998","unstructured":"Krause\n              JS.\n            \n          \n          Aging and life adjustment after spinal cord injury.\n\t\t\t\t\tSpinal Cord.\n\t\t\t\t\t1998;\n\t\t\t\t\t36(\n\t\t\t\t\t5):\n\t\t\t\t\t320\u2013\n\t\t\t\t\t328.\n\t\t\t\t\tdoi:10.1038\/sj.sc.3100540[doi]."},{"issue":"6","key":"i1082-0744-27-4-28-b27","series-title":"Spinal Cord","first-page":"349","article-title":"A 25-year longitudinal study of the natural course of aging after spinal cord injury","volume":"43","year":"2005","unstructured":"Krause\n              JS,\n            \n            \n              Broderick\n              L.\n            \n          \n          A 25-year longitudinal study of the natural course of aging after spinal cord injury.\n\t\t\t\t\tSpinal Cord.\n\t\t\t\t\t2005;\n\t\t\t\t\t43(\n\t\t\t\t\t6):\n\t\t\t\t\t349\u2013\n\t\t\t\t\t356.\n\t\t\t\t\tdoi: 3101726 [pii]."},{"issue":"1","key":"i1082-0744-27-4-28-b28","series-title":"J Rehabil Med","doi-asserted-by":"publisher","first-page":"84","DOI":"10.2340\/16501977-2173","article-title":"Effect on body composition and bone 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             Krakow\n              K,\n            \n            \n              Tripp\n              F,\n            \n            \n              Jung\n              M.\n            \n          \n          Effects of training with the ReWalk exoskeleton on quality of life in incomplete spinal cord injury: A single case study.\n\t\t\t\t\tSpinal Cord Ser Cases.\n\t\t\t\t\t2016;\n\t\t\t\t\t2:\n\t\t\t\t\t15025.\n\t\t\t\t\tdoi:10.1038\/scsandc.2015.25[doi]."},{"issue":"5","key":"i1082-0744-27-4-28-b32","series-title":"JAMA Neurol","doi-asserted-by":"publisher","first-page":"630","DOI":"10.1001\/jamaneurol.2017.5055","article-title":"Association of epidural stimulation with cardiovascular function in an individual with spinal cord injury","volume":"75","year":"2018","unstructured":"West\n              CR,\n            \n            \n              Phillips\n              AA,\n            \n            \n              Squair\n              JW,\n            \n          \n          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5):\n\t\t\t\t\t1394\u2013\n\t\t\t\t\t1409.\n\t\t\t\t\tdoi:10.1093\/brain\/awu038[doi]."},{"key":"i1082-0744-27-4-28-b35","series-title":"Neurol Res","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1080\/01616412.2020.1798106","article-title":"Neuroprosthesis for individuals with spinal cord injury","year":"2020","unstructured":"Kilgore\n              KL,\n            \n            \n              Anderson\n              KD,\n            \n            \n              Peckham\n              PH\n            \n          .\n\t\t\t\t\tNeuroprosthesis for individuals with spinal cord injury.\n\t\t\t\t\tNeurol Res.\n\t\t\t\t\t2020:\n\t\t\t\t\t1\u2013\n\t\t\t\t\t13.\n\t\t\t\t\tdoi:10.1080\/01616412.2020.1798106[doi]."},{"key":"i1082-0744-27-4-28-b36","article-title":"National resident matching program, results and data: 2020 main residency match","unstructured":"National resident matching program, results and data: 2020 main residency 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Rehabil","doi-asserted-by":"publisher","first-page":"252","DOI":"10.1310\/sci2403-252","article-title":"Evolution of neuroprosthetic approaches to restoration of upper extremity function in spinal cord injury","volume":"24","year":"2018","unstructured":"Kilgore\n              KL,\n            \n            \n              Bryden\n              A,\n            \n            \n              Keith\n              MW,\n            \n          \n          .\n\t\t\t\t\tEvolution of neuroprosthetic approaches to restoration of upper extremity function in spinal cord injury.\n\t\t\t\t\tTop Spinal Cord Inj Rehabil.\n\t\t\t\t\t2018;\n\t\t\t\t\t24(\n\t\t\t\t\t3):\n\t\t\t\t\t252\u2013\n\t\t\t\t\t264.\n\t\t\t\t\tdoi:10.1310\/sci2403-252[doi]."},{"key":"i1082-0744-27-4-28-b4","series-title":"J Spinal Cord Med","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1080\/10790268.2019.1656849","article-title":"Effects of robotic-assisted gait training on the central vascular health of individuals with spinal cord injury: A pilot study","year":"2019","unstructured":"Faulkner\n              J,\n            \n            \n              Martinelli\n              L,\n            \n            \n              Cook\n              K\n            \n          , .\n\t\t\t\t\tEffects of robotic-assisted gait training on the central vascular health of individuals with spinal cord injury: A pilot study.\n\t\t\t\t\tJ Spinal Cord Med.\n\t\t\t\t\t2019:\n\t\t\t\t\t1\u2013\n\t\t\t\t\t7.\n\t\t\t\t\tdoi:10.1080\/10790268.2019.1656849[doi]."},{"issue":"1","key":"i1082-0744-27-4-28-b5","series-title":"Top Spinal Cord Inj Rehabil","doi-asserted-by":"publisher","first-page":"78","DOI":"10.1310\/sci17-00014","article-title":"Initial outcomes from a multicenter study utilizing the indego powered exoskeleton in spinal cord injury","volume":"24","year":"2018","unstructured":"Tefertiller\n              C,\n            \n            \n              Hays\n              K,\n            \n            \n        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injury.\n\t\t\t\t\tNeurospine.\n\t\t\t\t\t2019;\n\t\t\t\t\t16(\n\t\t\t\t\t4):\n\t\t\t\t\t728\u2013\n\t\t\t\t\t738.\n\t\t\t\t\tdoi:10.14245\/ns.1836216.108[doi]."},{"issue":"15","key":"i1082-0744-27-4-28-b9","series-title":"J Neurotrauma","doi-asserted-by":"publisher","first-page":"1334","DOI":"10.1089\/neu.2013.3206","article-title":"Effects of serotonergic medications on locomotor performance in humans with incomplete spinal cord injury","volume":"31","year":"2014","unstructured":"Leech\n              KA,\n            \n            \n              Kinnaird\n              CR,\n            \n            \n              Hornby\n              TG.\n            \n          \n          Effects of serotonergic medications on locomotor performance in humans with incomplete spinal cord injury.\n\t\t\t\t\tJ Neurotrauma.\n\t\t\t\t\t2014;\n\t\t\t\t\t31(\n\t\t\t\t\t15):\n\t\t\t\t\t1334\u2013\n\t\t\t\t\t1342.\n\t\t\t\t\tdoi:10.1089\/neu.2013.3206[doi]."},{"issue":"3","key":"i1082-0744-27-4-28-b10","series-title":"Asian J Neurosurg","doi-asserted-by":"publisher","first-page":"656","DOI":"10.4103\/ajns.AJNS_259_16","article-title":"Riluzole can improve sensory and motor function in patients with acute spinal cord injury","volume":"13","year":"2018","unstructured":"Meshkini\n              A,\n            \n            \n              Salehpour\n              F,\n            \n            \n              Aghazadeh\n              J,\n            \n            \n              Mirzaei\n              F,\n            \n            \n              Naseri Alavi\n              SA.\n            \n          \n          Riluzole can improve sensory and motor function in patients with acute spinal cord injury.\n\t\t\t\t\tAsian J 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match.\n\t\t\t\t\thttps:\/\/mk0nrmp3oyqui6wqfm.kinstacdn.com\/2p-content\/uploads\/2020\/06\/MM_Results_and-Data_2020-1.pdf. 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