International spinal cord injury survey

International spinal cord injury survey

First cross-country study of the lived experience of SCI

 The International Spinal Cord Injury (InSCI) community survey is a joint initiative of ISCoS and ISPRM, conducted in 22 countries between 2017 and 2019, recruiting over 12,500 participants with SCI. InSCI forms part of a new global Learning Health System for SCI (LHS-SCI), which aims to describe the ‘lived experience’ of people with SCI and the societal response to those needs in an effort to implement the recommendations of the International Perspectives on Spinal Cord Injury. InSCI will provide invaluable data to compare the situation of persons living with SCI between and within countries.

A major milestone for this international research endeavor was reached with the publication of the first six overarching InSCI papers in the Archives of Physical Medicine and Rehabilitation in December 2020. In parallel to ongoing data analysis, scientific reporting and dissemination, implementation activities based on key findings of InSCI survey (within the context of LHS-SCI) is underway to improve SCI practices/service delivery and to facilitate policy change at the national level.

A 5-year InSCI survey is planned for 2023 and countries interested in participating should contact Christine Thyrian at Swiss Paraplegic Research (International Study Centre) by email: christine.thyrian@paraplegie.ch.