scholarly journals Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI

Spinal Cord ◽  
2016 ◽  
Vol 55 (4) ◽  
pp. 331-340 ◽  
Author(s):  
M J Mulcahey ◽  
L C Vogel ◽  
M Sheikh ◽  
J C Arango-Lasprilla ◽  
M Augutis ◽  
...  
Spinal Cord ◽  
2021 ◽  
Author(s):  
Carl M. Zipser ◽  
Konstantinos Margetis ◽  
Karlo M. Pedro ◽  
Armin Curt ◽  
Michael Fehlings ◽  
...  

AbstractDegenerative cervical myelopathy (DCM) is a common non-traumatic spinal cord disorder and characterized by progressive neurological impairment. Generally, it is still underdiagnosed and referral to spine specialists is often late, when patients already present with incomplete cervical spinal cord injury (SCI). To improve early diagnosis and accelerate referral, diagnostic criteria for DCM are required. Recently, AO Spine RECODE- DCM (REsearch Objectives and Common Data Elements for Degenerative Cervical Myelopathy) (aospine.org/recode), an international, interdisciplinary and interprofessional initiative, including patients with DCM, was funded with the aim to accelerate knowledge discovery that can change outcomes. In this perspective we advocate for the participation of SCI specialists in this process, where the expertise and perspective on this disorder and requirements for the diagnostic and therapeutic work up is well developed.


2021 ◽  
Vol 42 (4) ◽  
pp. 787-793 ◽  
Author(s):  
J. Fisher ◽  
L. Krisa ◽  
D.M. Middleton ◽  
B.E. Leiby ◽  
J.S. Harrop ◽  
...  

2012 ◽  
Vol 18 (1) ◽  
pp. 23-27 ◽  
Author(s):  
Fin Biering-Sørensen ◽  
Susan Charlifue ◽  
Michael DeVivo ◽  
Stacie Grinnon ◽  
Naomi Kleitman ◽  
...  

Spinal Cord ◽  
2015 ◽  
Vol 53 (4) ◽  
pp. 265-277 ◽  
Author(s):  
F Biering-Sørensen ◽  
S Alai ◽  
K Anderson ◽  
S Charlifue ◽  
Y Chen ◽  
...  

Spinal Cord ◽  
2010 ◽  
Vol 49 (1) ◽  
pp. 60-64 ◽  
Author(s):  
F Biering-Sørensen ◽  
S Charlifue ◽  
M J DeVivo ◽  
S T Grinnon ◽  
N Kleitman ◽  
...  

2012 ◽  
Vol 9 (2) ◽  
pp. 380-392 ◽  
Author(s):  
Yvette S. Nout ◽  
Ephron S. Rosenzweig ◽  
John H. Brock ◽  
Sarah C. Strand ◽  
Rod Moseanko ◽  
...  

2001 ◽  
Vol 44 (4) ◽  
pp. 751-762 ◽  
Author(s):  
Peter J. Watson ◽  
Thomas J. Hixon

Abdominal trussing constitutes an inward fixation of the abdominal wall. In the context of speech habilitation/rehabilitation, it is sometimes used to supplant, in part, the function of a paralyzed or paretic abdominal wall. A paralyzed or paretic abdominal wall may be found in individuals with cervical spinal cord injury or in individuals with other neurologic disorders, such as muscular dystrophy. This research was designed to study the effects of trussing as a clinical treatment. A study was designed to systematically and precisely place the abdominal wall at one position (50% inward) to study the effects of trussing (as compared to an untrussed condition) on lung volume and oral reading in three men with cervical spinal cord injury (C5–C6). Results showed that abdominal trussing increased vital capacity, realized via an increase of inspiratory capacity, presumably by optimization of the function of the diaphragm. With the increase in inspiratory capacity, longer utterance duration for oral reading was observed. With increased utterance duration, more syllables were produced per utterance, and pauses occurred at appropriate linguistic locations. Oral reading samples for trussed and untrussed conditions were submitted to preference judgment by a group of 10 judges. For two of the three men studied, oral reading during trussing was preferred because of longer phrases and pauses taken at suitable linguistic boundaries. The findings from this study support clinical impressions that abdominal trussing may be useful in improving speech in individuals with a paralyzed or paretic abdomen whose breathing function for speech is diminished.


2020 ◽  
Vol 48 (5) ◽  
pp. E6 ◽  
Author(s):  
Rachel E. Tsolinas ◽  
John F. Burke ◽  
Anthony M. DiGiorgio ◽  
Leigh H. Thomas ◽  
Xuan Duong-Fernandez ◽  
...  

OBJECTIVETraumatic spinal cord injury (SCI) is a dreaded condition that can lead to paralysis and severe disability. With few treatment options available for patients who have suffered from SCI, it is important to develop prospective databases to standardize data collection in order to develop new therapeutic approaches and guidelines. Here, the authors present an overview of their multicenter, prospective, observational patient registry, Transforming Research and Clinical Knowledge in SCI (TRACK-SCI).METHODSData were collected using the National Institute of Neurological Disorders and Stroke (NINDS) common data elements (CDEs). Highly granular clinical information, in addition to standardized imaging, biospecimen, and follow-up data, were included in the registry. Surgical approaches were determined by the surgeon treating each patient; however, they were carefully documented and compared within and across study sites. Follow-up visits were scheduled for 6 and 12 months after injury.RESULTSOne hundred sixty patients were enrolled in the TRACK-SCI study. In this overview, basic clinical, imaging, neurological severity, and follow-up data on these patients are presented. Overall, 78.8% of the patients were determined to be surgical candidates and underwent spinal decompression and/or stabilization. Follow-up rates to date at 6 and 12 months are 45% and 36.3%, respectively. Overall resources required for clinical research coordination are also discussed.CONCLUSIONSThe authors established the feasibility of SCI CDE implementation in a multicenter, prospective observational study. Through the application of standardized SCI CDEs and expansion of future multicenter collaborations, they hope to advance SCI research and improve treatment.


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