International SCI Data Sets Approved and finalized International Spinal Cord Injury (SCI) Data Sets (Biering-Sørensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T, Wing P. International Spinal Cord Injury Data Sets .
Spinal Cord. 2006 Sep;44(9):530-4.).
The International SCI Data Sets and the NINDS Common Data Elements
The National Institute on Neurological Disorders and Stroke (NINDS) of the US National Institutes of Health (NIH) has publically released a
comprehensive set of Common Data Elements (CDEs), including expert working group recommendations and case report forms, for use in Spinal Cord Injury Clinical Research and Clinical Trials. The overall NINDS-CDE project includes more than 15 different
neurological disease areas, and serves as a resource to help clinical investigators employ standardized data collection techniques as they design and conduct new clinical studies. The NINDS SCI CDEs were developed in collaboration with members
of the Executive Committee of the International SCI Standards and Data Sets, resulting in shared standard variable names and definitions. Many of the ISCoS International SCI Data Sets have been incorporated in whole or in part into the NINDS SCI
CDEs and recommendations. Both the NINDS CDEs and the ISCoS International SCI Data Sets are available through the NINDS CDE Project Website .
Translations of the International SCI Data Sets are encouraged but the recommendations in this publication must be followed: Biering-Sørensen F, Alexander MS, Burns S, Charlifue S, Devivo M, Dietz V, Krassioukov A, Marino R, Noonan V, Post MW, Stripling
T, Vogel L, Wing P. Recommendations for Translation and Reliability Testing of International Spinal Cord Injury Data Sets . Spinal Cord. 2011 Mar: 49(3):357-60.
International SCI Case Registration and ICECI Coding Software - Injury Prevention Module (Evaluation version)
Click on the links below and download zip files to the desktop. Unzip files using WinZip and read the ''Please read me first' file in the folders for instructions on starting the applications.
ICECI training application
ISCoS case registration and ICECI injury coding software (Update)
ASCoN case registration and ICECI injury coding software (Update)
Preview of updated ASCoN SCI database software
Activity and Participation Data Sets
Autonomic Dysreflexia Extended Data Set
Bowel Data Sets
International SCI Bowel Function Basic Data Set Version 2.1 English
International SCI Bowel Function Basic Data Set Version 2.0 English
International SCI Bowel Function Basic Data Set Version 2.0 CDE Database Structure
International SCI Bowel Function Basic Data Set Version 2.0 CDE Database Structure
International SCI Bowel Function Basic Data Set Version 1.1 English
International SCI Bowel Function Basic Data Set Version 1.1 Chinese
International SCI Bowel Function Basic Data Set Version 1.1 English with CDE Standard Variable Names
International SCI Bowel Function Extended Data Set Version 1.0 English
International SCI Bowel Function Basic Data Set Version 1.1 English with CDE Standard Variable Names
International SCI Bowel Function Basic Data Set Version 1.1 CDE Database Structure
Original Publications:Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set . Spinal
Cord. 2009 Mar;47(3):230-4. Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function extended spinal cord injury data set .
Spinal Cord. 2009 Mar;47(3):235-41. Juul T, Bazzocchi G, Coggrave M, Johannesen IL, Hansen RB, Thiyagarajan C, Poletti E, Krogh K, Christensen P. Reliability of the international spinal cord injury bowel function basic and extended data sets .
Spinal Cord. 2011 Aug;49(8):886-91. doi: 10.1038/sc.2011.23. Krogh K, Emmanuel A, Perrouin-Verbe B, Korsten MA, Mulcahey MJ, Biering-Sørensen F. International spinal cord injury bowel function basic data set (Version 2.0) .
Spinal Cord. 2017 Jul;55(7):692-698. doi: 10.1038/sc.2016.189. Krogh K, Halvorsen A, Pettersen AN, Biering-Sørensen F. Version 2.1 of the International Spinal Cord Injury Bowel Function Basic Data Set Spinal
Cord Series and Cases 5 , Article number: 63 | doi: 10.1038/s41394-019-0210-z
Cardiovascular Function Data Sets
Core Data Sets
Basic Data Set
International SCI Core Data Set (version 3.0)
Traning cases for the International SCI Core Data Set (version 3.0)
International SCI Core Data Set Version 2.0 English
International SCI Core Basic Data Set Version 2.0 CDE Database Structure
International SCI Core Basic Data Set Version 2.0 English with CDE Standard Variable Names
International SCI Core Data Set Version 2.0 Training Cases English
International SCI Core Data Set Version 1.1 English
International SCI Core Data Set Version 1.1 Chinese
International SCI Core Basic Data Set Version 1.1 English with CDE Standard Variable Names
International SCI Core Basic Data Set Version 1.1 CDE Database Structure
Original Publications
DeVivo M, Biering-Sørensen F, Charlifue S, Noonan V, Post M, Stripling T, Wing P; Executive Committee for the International SCI Data Sets Committees. International Spinal Cord Injury Core Data Set. Spinal Cord. 2006 Sep;44(9):535-40.
Devivo MJ, Biering-Sørensen F, New P, Chen Y. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord. 2011 May;49(5):596-9.
Biering-Sørensen F, DeVivo MJ, Charlifue S, Chen Y, New PW, Noonan V, Post MWM, Vogel L. International Spinal Cord Injury Core Data Set (version 2.0)-including standardization of reporting. Spinal Cord. 2017 Aug;55(8):759-764.
Biering-Sørensen F, Charlifue S, Chen Y, New PW, Noonan V, Post M, Rupp R, Vogel L. . International Spinal Cord Injury Core Data Set (version 3.0)—including standardization of reporting. Spinal Cord. 2023 Jan;61(1):65-68. doi: 10.1038/s41393-022-00862-2. PMID: 36307730.
Endocrine and Metabolic Function Data Sets
Education Data Set
Education Basic Data Set
Development of the International Spinal Cord Injury/DysfunctionEducation Basic Data Set
Original Publications:
Carney J, Fisher R, Augutis M, Charlifue S, Biering-Sørensen F, Höfers W, Hwang M, Wayne New P, Post M, Sadowsky C, Vogel L, Augustine L, Dent K, Mulcahey MJ. Development of the International Spinal Cord Injury/Education Basic Data Set. Spinal Cord Ser Cases. 2019 Oct 21;5:87. doi: 10.1038/s41394-019-0229-1. eCollection 2019.
Female Sexual and Reproductive Function Data Sets
International SCI Female Sexual and Reproductive Function Basic Data Set Version 2.0 English
International SCI Female Sexual and Reproductive Function Basic Data Set Version 1.0 English
International SCI Female Sexual and Reproductive Function Basic Data Set Version 2.0 - Japanese
International SCI Female Sexual and Reproductive Function Basic Data Set Version 2.0 English with CDE Standard Variable Names
International SCI Female Sexual and Reproductive Function Basic Data Set Version 1.0 English with CDE Standard Variable Names
International SCI Male and Female Sexual and Reproductive Function Basic Data Set Version 2.0 CDE Database Structure
International SCI Male and Female Sexual and Reproductive Function Basic Data Set Version 1.0 CDE Database Structure
Original Publications:
Alexander MS, Biering-Sørensen F, Elliott S, Kreuter M, Sønksen J.International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set. Spinal Cord. 2011 Jul;49(7):787-90.
Alexander MS, New PW, Biering-Sørensen F, Courtois F, Popolo GD, Elliott S, Kiekens C, Vogel L, Previnaire JG. International spinal cord injury male sexual function and female sexual and reproductive function basic data sets-version 2.0. Spinal Cord Ser Cases. 2017 Aug 10;3:17050. doi: 10.1038/scsandc.2017.50. eCollection 2017.
Fracture Data Sets
Lower Urinary Tract Function Data Sets
International SCI Lower Urinary Tract Basic Data Set Version 2.0 English
Cases for Training International SCI Lower Urinary Tract Function Basic Data Set (Version 2.0)
International SCI Lower Urinary Tract Basic Data Set Version 1.0 English
International SCI Lower Urinary Tract Basic Data Set Version 1.0 Chinese
International SCI Lower Urinary Tract Basic Data Set Version 2.0 - Japanese
International SCI Lower Urinary Tract Basic Data Set Version 1.0 English with CDE Standard Variable Names
International SCI Lower Urinary Tract Basic Data Set Version 1.0 CDE Database Structure
Original Publications:
Biering-Sørensen F, Kennelly M, Kessler TM, Linsenmeyer T, Pannek J, Vogel L, Wyndaele JJ. International Spinal Cord Injury Lower Urinary Tract Function Basic Data Set (version 2.0). Spinal Cord Ser Cases. 2018 Jul 6;4:60. doi: 10.1038/s41394-018-0090-7.
Biering-Sørensen F, Craggs M, Kennelly M, Schick E, Wyndaele JJ.International lower urinary tract function basic spinal cord injury data set. Spinal Cord. 2008 May;46(5):325-30.
Male Sexual Function Data Sets
International SCI Male Sexual Function Basic Data Set Version 2.0 English
International SCI Male Sexual Function Basic Data Set Version 1.0 English
International SCI Male Sexual Function Basic Data Set Version 1.0 Chinese
International SCI Male Function Basic Data Set Version 2.0 - Japanese
International SCI Male Sexual Function Basic Data Set Version 2.0 English with CDE Standard Variable Names
International SCI Male Sexual Function Basic Data Set Version 1.0 English with CDE Standard Variable Names
International SCI Male and Female Sexual and Reproductive Function Basic Data Set Version 2.0 CDE Database Structure
International SCI Male and Female Sexual and Reproductive Function Basic Data Set Version 1.0 CDE Database Structure
Original Publications:
Alexander MS, Biering-Sørensen F, Elliott S, Kreuter M, Sønksen J.International Spinal Cord Injury Male Sexual Function Basic Data Set .
Spinal Cord. 2011 Jul;49(7):795-8.
Alexander MS, New PW, Biering-Sørensen F, Courtois F, Popolo GD, Elliott S, Kiekens C, Vogel L, Previnaire JG. International spinal cord injury male sexual function and female sexual and reproductive function basic data sets-version 2.0. Spinal Cord Ser Cases. 2017 Aug 10;3:17050. doi: 10.1038/scsandc.2017.50. eCollection 2017.
Musculoskeletal Data Sets
International SCI Musculoskeletal Basic Data Set Version 1.0 English
International SCI Musculoskeletal Basic Data Set Training Cases Version 1.0 English
International SCI Musculoskeletal Basic Data Set Version 1.0 English with CDE Standard Variable Names
International SCI Musculoskeletal Basic Data Set Version 1.0 CDE Database Structure
Original Publications:
Biering-Sørensen F, Burns AS, Curt A, Harvey LA, Jane Mulcahey M, Nance PW, Sherwood AM, Sisto SA.International spinal cord injury musculoskeletal basic data set. Spinal
Cord. 2012 Nov;50(11):797-802; doi: 10.1038/sc.2012.102
Baunsgaard CB, Chhabra HS, Harvey LA, Savic G, Sisto SA, Qureshi F, Sachdev G, Saif M, Sharawat R, Yeomans J, Biering-Sørensen F. Reliability of the International Spinal Cord Injury Musculoskeletal Basic Data Set. Spinal Cord. 2016 Dec;54(12):1105-1113. doi: 10.1038/sc.2016.42.
Non-traumatic SCI Data Sets
Pain Data Sets
New Version 3.0 of the International SCI Pain Basic Data Set Syllabus including Training Cases
International SCI Pain Basic Data Set Version 2.0 English
International SCI Pain Basic Data Set Version 2.0 Japanese
International SCI Pain Basic Data Set Version 1.1 English
International SCI Pain Basic Data Set Version 1.1 Chinese
International SCI Pain Extended Data Set Version 1.0 English
International SCI Pain Extended Data Set Version 1.0 Japanese
International SCI Pain Basic Data Set Version 2.0 English with CDE Standard Variable Names
International SCI Pain Basic Data Set Version 1.1 English with CDE Standard Variable Names
International SCI Pain Extended Data Set Version 1.0 English with CDE Standard Variable Names
International SCI Pain Basic Data Set Version 2.0 CDE Database Structure
International SCI Pain Basic Data Set Version 1.1 CDE Database Structure
International SCI Pain Extended Data Set Version 1.0 CDE Database Structure
Original Publications:
Widerström-Noga E, Biering-Sørensen F, Bryce TN, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Rosner J, Taylor J. The international spinal cord injury pain basic data set (version 3.0). Spinal
Cord. 2023 Jul 25. doi: 10.1038/s41393-023-00919-w. Epub ahead of print. PMID: 37491608.
Widerström-Noga E, Biering-Sørensen F, Bryce TN, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set (version 2.0). Spinal Cord. 2014 Apr;52(4):282-6.
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Siddall PJ. The international spinal cord injury pain basic data set. Spinal Cord. 2008 Dec;46(12):818-23.
Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, Richards JS, Richardson EJ,Siddall PJ. The International Spinal Cord Injury Pain Extended Data Set (Version 1.0). Spinal Cord. 2016 Nov;54(11):1036-1046.
Jensen MP, Widerström-Noga E, Richards JS, Finnerup NB, Biering-Sørensen F,Cardenas DD. Reliability and validity of the International Spinal Cord Injury Basic Pain Data Set items as self-report measures. Spinal Cord. 2010 Mar;48(3):230-8. doi: 10.1038/sc.2009.112.
Pediatric Activity and Participation Data Sets
Pediatric Activities and Participation Basic Data Set Data Form
Hwang M, Augutis M, Sadowsky C, Höfers W, Vogel LC, Post M, Charlifue S, New PW, Fisher R, Carney J, Dent K, Mulcahey MJ.
The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set. Spinal Cord Ser Cases. 2019 Oct 31;5:91. doi: 10.1038/s41394-019-0230-8. eCollection
2019.
Physiotherapy Occupational Therapy Data Set
INTERNATIONAL SPINAL CORD INJURY PHYSICAL THERAPY – OCCUPATIONAL THERAPY BASIC DATA SET (Version 1.2)
International Spinal Cord Injury Physiotherapy - Occupational Therapy Basic Data Set – Version 1.1
International Spinal Cord Injury Physiotherapy - Occupational Therapy Basic Data Set
Original Publications:
Anderson KD, Field-Fote EC, Biering-Sørensen F, Bryden A, Harvey LA, Jones L, Mulcahey MJ, Mulroy S, Noonan VK, Post MWM, Rupp R, Schmidt-Read M.International Spinal Cord Injury Physical Therapy-Occupational Therapy Basic Data Set (Version 1.2). Spinal Cord Ser Cases. 2020 Aug 17;6(1):74. doi: 10.1038/s41394-020-00323-z.PMID: 32807768
Psychological Functioning Data Set
INTERNATIONAL SPINAL CORD INJURY PSYCHOLOGICAL FUNCTIONING BASIC DATA SETVersion 1.0
International Spinal Cord Injury Psychological Functioning Basic Data Set (PSYCHBDS) version 1.0
Original Publications:
Anderson KD, Field-Fote EC, Biering-Sørensen F, Bryden A, Harvey LA, Jones L, Mulcahey MJ, Mulroy S, Noonan VK, Post MWM, Rupp R, Schmidt-Read M.International Spinal Cord Injury Physical Therapy-Occupational Therapy Basic Data Set (Version 1.2). Spinal Cord Ser Cases. 2020 Aug 17;6(1):74. doi: 10.1038/s41394-020-00323-z.PMID: 32807768
Pulmonary Function Data Sets
Quality of Life Data Sets
International SCI Quality of Life Basic Data Set Version 2.0 English
International SCI Quality of Life Basic Data Set Version 1.0 English
International SCI Quality of Life Basic Data Set Version 1.0 Chinese
International SCI Quality of Life Basic Data Set Version 1.0 Swedish
International Spinal Cord Injury Data Sets Quality of Life Basic Data Set Version 1.0 Hindi
International SCI Quality of Life Basic Data Set Version 1.0 English with CDE Standard Variable Names
International SCI Quality of Life Basic Data Set Version 1.0 CDE Database Structure
Original Publications:
Charlifue S, Post MW, Biering-Sørensen F, Catz A, Dijkers M, Geyh S, Horsewell J, Noonan V, Noreau L, Tate D, Sinnott KA.
International spinal cord injury quality of life basic data set. Spinal Cord. 2012 Sep;50(9):672-5. doi: 10.1038/sc.2012.27.
International Spinal Cord Injury Quality of Life Basic Data Set Version 1.0. Spinal Cord. 2022 Sep;60(9):784-788.
Skin and Thermoregulation Function Data Sets
International SCI Skin and Thermoregulation Function Basic Data Set Version 1.1 English
International SCI Skin and Thermoregulation Function Basic Data Set Version 1.0 English
International SCI Skin and Thermoregulation Function Basic Data Set Version 1.1.1
International SCI Skin and Thermoregulation Function Basic Data Set Version 1.0 English with CDE Standard Variable Names
International SCI Skin and Thermoregulation Function Basic Data Set Version 1.0 CDE Database Structure
Original Publications:
Biering-Sørensen F, Alexander MS, van Asbeck FWA, Donovan W, Krassioukov A, Post MWM. Version 1.1 of the international spinal cord injury skin and thermoregulation function basic data set. Spinal Cord. 2017 Jun;55(6):566-569. doi: 10.1038/sc.2016.188.
Karlsson AK, Krassioukov A, Alexander MS, Donovan W, Biering-Sørensen F. Version 1.1 of the international spinal cord injury skin and thermoregulation function basic data set
Karlsson AK, Krassioukov A, Alexander MS, Donovan W, Biering-Sørensen F. International spinal cord injury skin and thermoregulation function basic data set. Spinal Cord. 2012 Jul;50(7):512-6.
Socio-Demographic Data Set
Spinal Column Injury Data Sets
Spinal Interventions and Surgical Procedures Data Sets
Upper Extremity Data Sets
Urinary Tract Imaging Data Sets
Urinary Tract Infection Data Sets
Urodynamic Data Sets
