The Guttmann Lecture 2025: standardization of data collection in individuals with spinal cord injury

Review.

To describe the development of standardized data related to individuals with spinal cord injury (SCI). These are needed to compare and share data across centres, countries, and studies, to improve prevention and treatment.

International.

The SCI community works to obtain consensus regarding the best available data and measures for use in clinical practice and research. Data elements are continuously developed and updated. Efforts are made to ensure that the variables and elements are as universal as possible, not least by involving individuals from diverse regions of the world in their development and review. Including people with lived experience helps ensure data are relevant and enhances quality of life.

The first standardisation to gain international impact was the Frankel Classification, which was developed into the International Standards for Neurological Classification of SCI. Similarly, the Spinal Cord Independence Measure for Activities of Daily Living for individuals with SCI was developed. The International SCI Data Sets have been developed across many areas relevant for individuals with SCI including the SCI Core Data Set, 24 SCI Basic, and five SCI Extended Data Sets. These international data elements/measurements are included as part of SCI registries and electronic medical records worldwide. Big Data perspectives are needed, requiring multi-modal data and open science and data to be FAIR (Findable, Accessible, Interoperable and Reusable). Artificial intelligence requires data to be interoperable so data can be exchanged.

This work will hopefully identify new associations and new possibilities for prevention and treatment.