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.). 

Core

Spinal Column Injury

Spinal Interventions and Surgical Procedures

Non-traumatic SCI

Lower Urinary Tract Function

Urinary Tract Infection

Urodynamic

Urinary Tract Imaging

Bowel Function

Female Sexual and Reproductive Function

Male Sexual Function

Musculoskeletal

Upper Extremity

Pain

Cardiovascular Function

Pulmonary Function

Endocrine and Metabolic Function

Skin and Thermoregulation Function

Activity and Participation

Quality of Life

Fracture Risk

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 encourged 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