International Spinal Cord Injury Lower Urinary Tract Function Basic Data Set (version 2.0)

Study design: Revision, review, and presentation of the International Spinal Cord Injury (SCI) Lower Urinary Tract (LUT) Function Basic Data Set (version 2.0).

Objectives: Describe the revision and review and present the data set.

Setting: International.

Methods: The first version of the data set was revised according to new knowledge and suggestions. The review included International SCI Data Sets Committee, American Spinal Injury Association (ASIA) board, International Spinal Cord Society (ISCoS) executive and scientific committees, major organizations, and interested individuals. The data set was also on ASIA and ISCoS websites. All replies were answered and appropriate adjustments made. Finally, the data set was endorsed by ASIA board, and ISCoS executive and scientific committees.

Results: Among revisions are adoptions of new terminology by the International Continence Society. For most variables, advice for collection of information from pediatric patients stated. For the variable 'Bladder emptying', is in the data collection form to the response category 'Normal voiding' expanded. 'Sacral Anterior Root Stimulator' is deleted as response category. For the variable 'Any involuntary urine leakage (incontinence) within the last 4 weeks' 'last 4 weeks' has replaced 'last 3 months'. The response categories have been adjusted to: 'Daily', 'Once or more per week (but not daily)', 'Less than once per week', 'Never', 'Not applicable' and 'Unknown'. For the variable 'Any drugs for the urinary tract within the last four weeks' 'last four weeks' has replaced 'last year'.

Conclusions: The International SCI LUT Function Basic Data Set (version 2.0) with its complete syllabus is available from http://www.iscos.org.uk/international-sci-data-sets.