Importance of Prospective Registries and Clinical Research Networks in the Evolution of Spinal Cord Injury Care

被引:8
作者
Kelly-Hedrik, Margot [1 ]
Abd-El-Barr, Muhammad M. [2 ]
Aarabi, Bizhan [3 ]
Curt, Armin [4 ]
Howley, Susan P. [5 ]
Harrop, James S. [6 ]
Kirshblum, Steven [7 ,8 ,9 ]
Neal, Christopher J. [10 ]
Noonan, Vanessa [11 ]
Park, Christine [1 ]
Ugiliweneza, Beatrice [12 ]
Tator, Charles [13 ]
Toups, Elizabeth G. [14 ]
Fehlings, Michael G. [13 ]
Williamson, Theresa [15 ]
Guest, James D. [16 ,17 ,18 ]
机构
[1] Duke Univ, Sch Med, Durham, NC USA
[2] Duke Univ, Dept Neurosurg, Durham, NC USA
[3] Univ Maryland, Sch Med, New York, NY USA
[4] Balgrist Univ Hosp, Spinal Cord Injury Ctr, Zurich, Switzerland
[5] Christopher & Dana Reeve Fdn, Short Hills, NJ USA
[6] Thomas Jefferson Univ Hosp, Philadelphia, PA USA
[7] Rutgers New Jersey Med Sch, Newark, NJ USA
[8] Kessler Inst Rehabil, West Orange, NJ USA
[9] Kessler Fdn, West Orange, NJ USA
[10] Walter Reed Natl Mil Med Ctr, Div Neurosurg, Bethesda, MD USA
[11] PRAXIS Spinal Cord Inst, Vancouver, BC, Canada
[12] Kentucky Spinal Cord Injury Res Ctr, Louisville, KY USA
[13] Univ Toronto, Dept Surg, Div Neurosurg & Spine Program, Toronto, ON, Canada
[14] Houston Methodist Hosp, Dept Neurosurg, Houston, TX USA
[15] Massachusetts Gen Hosp, Dept Neurosurg, Boston, MA USA
[16] Univ Miami, Neurol Surg, Miami, FL 33136 USA
[17] Univ Miami, Miami Project Cure Paralysis, Miami, FL 33136 USA
[18] Univ Miami, Miller Sch Med, Miami Project Cure Paralysis, 1095 NW 14th Terrace, Miami, FL 33136 USA
关键词
counterfactual; digital twin; personalized medicine; registry; spinal cord injury; QUALITY-OF-LIFE; MOTOR RECOVERY; PROSPECTIVE COHORT; CAUSAL INFERENCE; PREDICTION RULE; BIG DATA; MODEL; HEALTH; MULTICENTER; PATIENT;
D O I
10.1089/neu.2022.0450
中图分类号
R4 [临床医学];
学科分类号
1002 ; 100602 ;
摘要
Only 100 years ago, traumatic spinal cord injury (SCI) was commonly lethal. Today, most people who sustain SCI survive with continual efforts to improve their quality of life and neurological outcomes. SCI epidemiology is changing as preventative interventions reduce injuries in younger individuals, and there is an increased incidence of incomplete injuries in aging populations. Early treatment has become more intensive with decompressive surgery and proactive interventions to improve spinal cord perfusion. Accurate data, including specialized outcome measures, are crucial to understanding the impact of epidemiological and treatment trends. Dedicated SCI clinical research and data networks and registries have been established in the United States, Canada, Europe, and several other countries. We review four registry networks: the North American Clinical Trials Network (NACTN) SCI Registry, the National Spinal Cord Injury Model Systems (SCIMS) Database, the Rick Hansen SCI Registry (RHSCIR), and the European Multi-Center Study about Spinal Cord Injury (EMSCI). We compare the registries' focuses, data platforms, advanced analytics use, and impacts. We also describe how registries' data can be combined with electronic health records (EHRs) or shared using federated analysis to protect registrants' identities. These registries have identified changes in epidemiology, recovery patterns, complication incidence, and the impact of practice changes such as early decompression. They've also revealed latent disease-modifying factors, helped develop clinical trial stratification models, and served as matched control groups in clinical trials. Advancing SCI clinical science for personalized medicine requires advanced analytical techniques, including machine learning, counterfactual analysis, and the creation of digital twins. Registries and other data sources help drive innovation in SCI clinical science.
引用
收藏
页码:1834 / 1848
页数:15
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