International Spinal Cord Injury Data Set Committee
The Committee oversees the International Spinal Cord Injury (SCI) Data Sets. This Committee will approve new International SCI Data Set working groups. In addition, the Committee will review updated and new data sets proposed.
Process to Establish Working Groups to Develop, Review and Approve International SCI Data Sets
An International SCI Data Set Working Group (WG) is established for the topic. The WG should include members from various parts of the world, from international organizations related to the field, pediatric expertise, as well as individuals
with lived experience.
- The SCI Data Set WG is approved by the International SCI Data Sets Committee.
- The WG finalizes the first draft of the SCI Data Set based on the available evidence in the literature and guidelines.
- The International SCI Data Sets Committee reviews the SCI Data Set.
- Comments from the Committee are discussed, and revisions may be made.
- ASIA Board and ISCoS Scientific & Research Committee and Executive Committees review the SCI Data Set.
- The SCI Data Set is reviewed and posted for public comments before final approval.
- After approval, the SCI Data Set is posted on the ISCoS and NIH NINDS CDE websites and published.
Recommendations for Translating and Reliability Testing
Reference: Biering-Sørensen F, Alexander MS, Burns S, et al. Recommendations for translation and reliability testing of International Spinal Cord Injury Data Sets. Spinal Cord.
2011 Mar;49(3):357-60. The paper can be found here.
Members - Chairs of the Working Groups for the International SCI Data Sets
| Data Set |
Chair(s) |
| International SCI Activity and Participation Basic Data Set |
Marcel Post |
| International SCI Pediatric Activity and Participation Basic Data Set |
Miriam Hwang |
| International SCI Autonomic Dysreflexia Extended Data Set |
Nan Liu |
| International SCI Bowel Function Basic & Extended Data Sets |
Klaus Krogh |
| International SCI Cardiovascular Function Basic Data Set |
Andrei Krassioukov |
| International SCI Core Data Set |
Fin Biering-Sørensen |
| International SCI Endocrine and Metabolic Function Basic & Extended Data Sets |
William Bauman |
| International SCI Education Basic Data Set |
Rhona Fisher & Joan Carney |
| International SCI Fracture History Extended Data Set |
Leslie Morse |
| International SCI Lower Urinary Tract Function Basic Data Set |
Fin Biering-Sørensen |
| International SCI Pain Basic Data Set |
Eva Widerström-Noga |
| International SCI Psychological Functioning Basic Data Set |
Denise Tate & Marcel Post |
| International SCI Pulmonary Function Basic Data Set |
Fin Biering-Sørensen |
| International SCI Quality of Life Basic Data Set |
Susan Charlifue |
| International SCI Female Sexual and Reproductive Function Basic & Male Sexual Function Basic Data Sets |
Marcalee Sipski Alexander |
| International SCI Skin and Thermoregulation Function Basic Data Set |
Fin Biering-Sørensen |
| International SCI Socio-Demographic Data Set |
Yuying Chen |
| International SCI Spinal Column Injury Basic Data Set |
Vanessa Noonan |
| International SCI Surgical and Interventional Procedures Basic Data Set |
Vanessa Noonan |
| International SCI Urinary Tract Imaging, Infection, & Urodynamics Basic Data Sets |
Fin Biering-Sørensen, Rochelle Tractenberg, Jürgen Pannek |
Members with Expertise in Pediatric SCI Data
- Lawrence Vogel
- MJ (Mary Jane) Mulcahey
- Kathy Zebracki
National Institute of Health (NIH) NINDS SCI Common Data Elements
M. Carolina Mendoza-Puccini
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