Literature DB >> 20733589

Incorporation of the International Spinal Cord Injury Data Set elements into the National Institute of Neurological Disorders and Stroke Common Data Elements.

F Biering-Sørensen1, S Charlifue, M J Devivo, S T Grinnon, N Kleitman, Y Lu, J Odenkirchen.   

Abstract

OBJECTIVES: To develop consistent variable names and a common database structure for the data elements in the International Spinal Cord Injury (SCI) Data Sets.
SETTING: National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDE) Project and The Executive Committee of the International SCI Standards and Data Sets committees (ECSCI).
METHODS: The NINDS CDE team creates a variable name for each defined data element in the various International SCI Data Sets. Members of the ECSCI review these in an iterative process to make the variable names logical and consistent across the data sets. Following this process, the working group for the particular data set reviews the variable names, and further revisions and adjustments may be made. In addition, a database structure for each data set is developed allowing data to be stored in a uniform way in databases to promote sharing data from different studies.
RESULTS: The International SCI Data Sets variable names and database specifications will be available through the web sites of the International Spinal Cord Society (http://www.iscos.org.uk), the American Spinal Injury Association (http://www.asia-spinalinjury.org) and the NINDS CDE project web site (http://www.CommonDataElements.ninds.nih.gov).
CONCLUSION: This process will continue as additional International SCI Data Sets fulfill the requirements of the development and approval process and are ready for implementation.

Entities:  

Mesh:

Year:  2010        PMID: 20733589      PMCID: PMC2992608          DOI: 10.1038/sc.2010.90

Source DB:  PubMed          Journal:  Spinal Cord        ISSN: 1362-4393            Impact factor:   2.772


  11 in total

1.  International standards for neurological classification of spinal cord injury.

Authors:  Ralph J Marino; Tarcisio Barros; Fin Biering-Sorensen; Stephen P Burns; William H Donovan; Daniel E Graves; Michael Haak; Lesley M Hudson; Michael M Priebe
Journal:  J Spinal Cord Med       Date:  2003       Impact factor: 1.985

Review 2.  International Spinal Cord Injury Data Sets.

Authors:  F Biering-Sørensen; S Charlifue; M DeVivo; V Noonan; M Post; T Stripling; P Wing
Journal:  Spinal Cord       Date:  2006-09       Impact factor: 2.772

Review 3.  Overview of the national spinal cord injury statistical center database.

Authors:  Michael J DeVivo; Bette K Go; Amie B Jackson
Journal:  J Spinal Cord Med       Date:  2002       Impact factor: 1.985

4.  The international spinal cord injury pain basic data set.

Authors:  E Widerström-Noga; F Biering-Sørensen; T Bryce; D D Cardenas; N B Finnerup; M P Jensen; J S Richards; P J Siddall
Journal:  Spinal Cord       Date:  2008-06-03       Impact factor: 2.772

5.  International urinary tract imaging basic spinal cord injury data set.

Authors:  F Biering-Sørensen; M Craggs; M Kennelly; E Schick; J-J Wyndaele
Journal:  Spinal Cord       Date:  2008-11-25       Impact factor: 2.772

6.  International urodynamic basic spinal cord injury data set.

Authors:  F Biering-Sørensen; M Craggs; M Kennelly; E Schick; J-J Wyndaele
Journal:  Spinal Cord       Date:  2008-01-29       Impact factor: 2.772

7.  International lower urinary tract function basic spinal cord injury data set.

Authors:  F Biering-Sørensen; M Craggs; M Kennelly; E Schick; J-J Wyndaele
Journal:  Spinal Cord       Date:  2007-11-27       Impact factor: 2.772

8.  International bowel function basic spinal cord injury data set.

Authors:  K Krogh; I Perkash; S A Stiens; F Biering-Sørensen
Journal:  Spinal Cord       Date:  2008-08-26       Impact factor: 2.772

9.  International bowel function extended spinal cord injury data set.

Authors:  K Krogh; I Perkash; S A Stiens; F Biering-Sørensen
Journal:  Spinal Cord       Date:  2008-08-26       Impact factor: 2.772

10.  International spinal cord injury cardiovascular function basic data set.

Authors:  A Krassioukov; M S Alexander; A-K Karlsson; W Donovan; C J Mathias; F Biering-Sørensen
Journal:  Spinal Cord       Date:  2010-01-26       Impact factor: 2.772

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  18 in total

Review 1.  Are Publicly Funded Health Databases Geographically Detailed and Timely Enough to Support Patient-Centered Outcomes Research?

Authors:  Soojin Min; Laurie T Martin; Carolyn M Rutter; Thomas W Concannon
Journal:  J Gen Intern Med       Date:  2018-09-20       Impact factor: 5.128

2.  Using the Spinal Cord Injury Common Data Elements.

Authors:  Fin Biering-Sørensen; Susan Charlifue; Michael J Devivo; Stacie T Grinnon; Naomi Kleitman; Yun Lu; Joanne Odenkirchen
Journal:  Top Spinal Cord Inj Rehabil       Date:  2012

3.  Standardizing the structure of stroke clinical and epidemiologic research data: the National Institute of Neurological Disorders and Stroke (NINDS) Stroke Common Data Element (CDE) project.

Authors:  Jeffrey L Saver; Steven Warach; Scott Janis; Joanne Odenkirchen; Kyra Becker; Oscar Benavente; Joseph Broderick; Alexander W Dromerick; Pamela Duncan; Mitchell S V Elkind; Karen Johnston; Chelsea S Kidwell; James F Meschia; Lee Schwamm
Journal:  Stroke       Date:  2012-02-02       Impact factor: 7.914

Review 4.  Common data elements for spinal cord injury clinical research: a National Institute for Neurological Disorders and Stroke project.

Authors:  F Biering-Sørensen; S Alai; K Anderson; S Charlifue; Y Chen; M DeVivo; A E Flanders; L Jones; N Kleitman; A Lans; V K Noonan; J Odenkirchen; J Steeves; K Tansey; E Widerström-Noga; L B Jakeman
Journal:  Spinal Cord       Date:  2015-02-10       Impact factor: 2.772

5.  Translation and validation of two International Spinal Cord Injury (SCI) Data Sets-a modified process.

Authors:  Kerstin Wahman; Erika Nilsson; Wolfram Antepohl; Kersti Samuelsson; Elisabet Åkesson; André Kuhlefelt Sandberg; Marika Augutis
Journal:  Spinal Cord Ser Cases       Date:  2019-12-17

6.  The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set.

Authors:  Miriam Hwang; Marika Augutis; Cristina Sadowsky; Wiebke Höfers; Lawrence C Vogel; Marcel Post; Susan Charlifue; Peter Wayne New; Rhona Fisher; Joan Carney; Kathryn Dent; M J Mulcahey
Journal:  Spinal Cord Ser Cases       Date:  2019-10-31

7.  Development of the International Spinal Cord Injury Activities and Participation Basic Data Set.

Authors:  M W Post; S Charlifue; F Biering-Sørensen; A Catz; M P Dijkers; J Horsewell; V K Noonan; L Noreau; D G Tate; K A Sinnott
Journal:  Spinal Cord       Date:  2015-10-20       Impact factor: 2.772

Review 8.  Recommendations for evaluation of neurogenic bladder and bowel dysfunction after spinal cord injury and/or disease.

Authors:  Denise G Tate; Tracey Wheeler; Giulia I Lane; Martin Forchheimer; Kim D Anderson; Fin Biering-Sorensen; Anne P Cameron; Bruno Gallo Santacruz; Lyn B Jakeman; Michael J Kennelly; Steve Kirshblum; Andrei Krassioukov; Klaus Krogh; M J Mulcahey; Vanessa K Noonan; Gianna M Rodriguez; Ann M Spungen; David Tulsky; Marcel W Post
Journal:  J Spinal Cord Med       Date:  2020-03       Impact factor: 1.985

Review 9.  Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI.

Authors:  M J Mulcahey; L C Vogel; M Sheikh; J C Arango-Lasprilla; M Augutis; E Garner; E M Hagen; L B Jakeman; E Kelly; R Martin; J Odenkirchen; A Scheel-Sailer; J Schottler; H Taylor; C C Thielen; K Zebracki
Journal:  Spinal Cord       Date:  2016-11-15       Impact factor: 2.772

10.  Report of a workshop on research gaps in the treatment of cerebral palsy.

Authors:  Codrin Lungu; Deborah Hirtz; Diane Damiano; Paul Gross; Jonathan W Mink
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