Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Article
  • Published:

The international spinal cord injury pain basic data set (version 3.0)

Spinal Cord volume 61, pages 536–540 (2023)Cite this article

Subjects

Abstract

Study design

Expert opinion, feedback, revisions, and final consensus.

Objectives

To update the International Spinal Cord Injury Pain Basic Data Set (ISCIPBDS version 2.0) and incorporate suggestions from the SCI pain clinical and research community with respect to overall utility.

Setting

International.

Methods

The ISCIPBDS working group evaluated these suggestions and made modifications. The revised ISCIPBDS (Version 3.0) was then reviewed by members of the International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, individual reviewers and societies, and posted on the ASIA and ISCoS websites for 1 month to elicit comments before final approval by ASIA and ISCoS.

Results

The ISCIPBDS (Version 3.0) was updated to make the dataset more flexible and useful: 1. The assessment can be based on the patient’s perception of several of his/her “worst” pain(s) or based on the International SCI Pain (ISCIP) Classification-defined or other pain types, depending on the specific research questions or clinical needs. 2. Pain interference should usually be rated for overall pain but may also be used for specific pain problems if needed. 3. An optional pain drawing was added to complement the check box documentation of pain location. 4. Data categories consistent with the Extended Pain Dataset list of current treatments were added. 5. Several new training cases were added.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

References

  1. Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, et al. The international spinal cord injury pain basic data set. Spinal Cord. 2008;46:818–23.

    Article  PubMed  Google Scholar 

  2. Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, et al. The international spinal cord injury pain basic data set (version 2.0). Spinal Cord. 2014;52:282–6.

    Article  PubMed  Google Scholar 

  3. Azadmanjir Z, Jazayeri SB, Habibi Arejan R, Ghodsi Z, Sharif-Alhoseini M, Kheiri G, et al. The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care. Spinal Cord Ser Cases. 2020;6:17.

    Article  PubMed Central  PubMed  Google Scholar 

  4. Nachtegaal J, van Langeveld SA, Slootman H, Post MWM.Dutch-Flemish Spinal Cord Society Implementation of a standardized dataset for collecting information on patients with spinal cord injury. Top Spinal Cord Inj Rehabil. 2018;24:133–40.

    Article  PubMed Central  PubMed  Google Scholar 

  5. Biering-Sørensen F, Alai S, Anderson K, Charlifue S, Chen Y, DeVivo M, et al. Common data elements for spinal cord injury clinical research: a National Institute for Neurological Disorders and Stroke project. Spinal Cord. 2015;53:265–77.

    Article  PubMed Central  PubMed  Google Scholar 

  6. Bryce TN, Biering-Sorensen F, Finnerup NB, Cardenas DD, Defrin R, Lundeberg T, et al. International spinal cord injury pain (ISCIP) classification: part I. Background and description. Spinal Cord. 2012;50:413–7.

    Article  CAS  PubMed  Google Scholar 

  7. Lütolf R, Rosner J, Curt A, Hubli M. Indicators of central sensitization in chronic neuropathic pain after spinal cord injury. Eur J Pain. 2022;26:2162–75.

    Article  PubMed Central  PubMed  Google Scholar 

  8. Gibbs K, Beaufort A, Stein A, Leung TM, Sison C, Bloom O. Assessment of pain symptoms and quality of life using the International Spinal Cord Injury Data Sets in persons with chronic spinal cord injury. Spinal Cord Ser Cases. 2019;5:32.

    Article  PubMed Central  PubMed  Google Scholar 

  9. Scheuren PS, Gagné M, Jutzeler CR, Rosner J, Mercier C, Kramer JLK. Tracking changes in neuropathic pain after acute spinal cord injury. Front Neurol. 2019;10:90.

    Article  PubMed Central  PubMed  Google Scholar 

  10. Gagné M, Côté I, Boulet M, Jutzeler CR, Kramer JLK, Mercier C. Conditioned pain modulation decreases over time in patients with neuropathic pain following a spinal cord injury. Neurorehabil Neural Repair. 2020;34:997–1008.

    Article  PubMed Central  PubMed  Google Scholar 

  11. Burke D, Fullen BM, Lennon O. Pain profiles in a community dwelling population following spinal cord injury: a national survey. J Spinal Cord Med. 2019;42:201–11.

    Article  PubMed  Google Scholar 

  12. Tsai CY, Bryce TN, Delgado AD, Mulroy S, Maclntyre B, Charlifue S, et al. Treatments that are perceived to be helpful for non-neuropathic pain after traumatic spinal cord injury: a multicenter cross-sectional survey. Spinal Cord. 2021;59:520–8.

    Article  PubMed  Google Scholar 

  13. Felix ER, Cardenas DD, Bryce TN, Charlifue S, Lee TK, MacIntyre B, et al. Prevalence and impact of neuropathic and nonneuropathic pain in chronic spinal cord injury. Arch Phys Med Rehabil. 2022;103:729–37.

    Article  PubMed  Google Scholar 

  14. Bryce TN, Tsai CY, Delgado AD, Mulroy SJ, Welch A, Cardenas DD, et al. Treatments perceived to be helpful for neuropathic pain after traumatic spinal cord injury: a multicenter cross-sectional survey study. J Spinal Cord Med. 2022;22:1–10.

    Article  Google Scholar 

  15. Anderson KD, Guest JD, Dietrich WD, Bartlett Bunge M, Curiel R, Dididze M, et al. Safety of autologous human schwann cell transplantation in subacute thoracic spinal cord injury. J Neurotrauma. 2017;34:2950–63.

    Article  PubMed  Google Scholar 

  16. Biering-Sørensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T, et al. International spinal cord injury data sets. Spinal Cord. 2006;44:530–4.

    Article  PubMed  Google Scholar 

  17. Biering-Sørensen F, Charlifue S, Chen Y, New PW, Noonan V, Post MWM, et al. International spinal cord injury core data set (version 3.0)—including standardization of reporting. Spinal Cord. 2023;61:65–8.

  18. Widerström-Noga E, Biering-Sørensen F, Bryce T, Cardenas DD, Finnerup NB, Jensen MP, et al. The International spinal cord injury pain extended data set (version 1.0). Spinal Cord. 2016;54:1036–46.

    Article  PubMed  Google Scholar 

  19. Rosner J, Lütolf R, Hostettler P, Villiger M, Clijsen R, Hohenauer E, et al. Assessment of neuropathic pain after spinal cord injury using quantitative pain drawings. Spinal Cord. 2021;59:529–37.

    Article  PubMed Central  PubMed  Google Scholar 

  20. Rupp R, Biering-Sørensen F, Burns SP, Graves DE, Guest J, Jones L, et al. International standards for neurological classification of spinal cord injury: revised 2019. Top Spinal Cord Inj Rehabil. 2021;27:1–22.

    Article  PubMed Central  PubMed  Google Scholar 

Download references

Acknowledgements

The authors want to thank the International SCI Data Sets Committee and the ISCoS and ASIA Boards for helpful suggestions. We also want to thank the following individual reviewers and their teams for their thoughtful suggestions: Stephen Burns, Suzanne Groah, Rüdiger Rupp, Steven Kirshblum, Dolores Soler, Kholofelo Mashola, and the Balgrist team. Dr. Julian Taylor acknowledges support from Research Project MINECO: PID2020-119948RB-I00 and Fundacion Koplowitz (2020).

Author information

Authors and Affiliations

  1. Miami Project to Cure Paralysis, University of Miami, Miller School of Medicine, Miami, FL, USA

    Eva Widerström-Noga

  2. Department of Physical Medicine and Rehabilitation, University of Miami, Miller School of Medicine, Miami, FL, USA

    Eva Widerström-Noga & Diana D. Cardenas

  3. Department for Brain and Spinal Cord Injuries, Rigshospitalet, and Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark

    Fin Biering-Sørensen

  4. Department of Rehabilitation and Human Performance, The Icahn School of Medicine at Mount Sinai, New York, NY, USA

    Thomas N. Bryce

  5. Danish Pain Research Center, Department of Clinical medicine, Aarhus University, Aarhus, Denmark

    Nanna B. Finnerup

  6. Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA

    Mark P. Jensen

  7. Department of Physical Medicine and Rehabilitation, University of Alabama at Birmingham, Birmingham, AL, USA

    J. Scott Richards

  8. Spinal Cord Injury Center, Balgrist University Hospital, University of Zurich, Zurich, Switzerland

    Jan Rosner

  9. Department of Neurology, University Hospital Bern, Inselspital, University of Bern, Bern, Switzerland

    Jan Rosner

  10. Sensorimotor Function Group, Hospital Nacional de Parapléjicos, Servicio de Salud Castilla-La Mancha (SESCAM), Toledo, Spain

    Julian Taylor

  11. Harris Manchester College, University of Oxford, Oxford, UK

    Julian Taylor

  12. Instituto de Investigación Sanitaria de Castilla-La Mancha (SESCAM), Hospital Nacional de Parapléjicos, Toledo, Spain

    Julian Taylor

Authors
  1. Eva Widerström-Noga
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Fin Biering-Sørensen
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Thomas N. Bryce
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Diana D. Cardenas
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Nanna B. Finnerup
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Mark P. Jensen
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. J. Scott Richards
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Jan Rosner
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Julian Taylor
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

All authors are active member of the ISCIPBDS committee and contributed to the content, writing and edits of the manuscript.

Corresponding author

Correspondence to Eva Widerström-Noga.

Ethics declarations

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary information

Appendix

Appendix

INTERNATIONAL SPINAL CORD INJURY PAIN BASIC DATA SET

DATA COLLECTION FORM – Version 3.0

Date of data collection: YYYY/MM/DD

Have you had any pain during the last seven days including today:

□ No □ Yes

If yes:

How many different pain problems do you have?

□ 1; □ 2; □ 3; □ 4; □ >5

Please describe one or several pain problems or specific pain types of interest with respect to pain interference

The pain interference items can be used to describe overall pain or individual pains. To encourage comparability across studies, even when a user allows respondents to rate pain interference for more than one pain problem, we recommend that respondents still be invited to rate overall pain interference.

Please note that the time period during the last week applies to all pain interference questions.

In general, how much has pain interfered with your day-to-day activities in the last week?

No interference □ 0 - □ 1 - □ 2 - □ 3 - □ 4 - □ 5 - □ 6 - □ 7 - □ 8 - □ 9 - □ 10 Extreme interference

In general, how much has pain interfered with your overall mood in the last week?

No interference □ 0 - □ 1 - □ 2 - □ 3 - □ 4 - □ 5 - □ 6 - □ 7 - □ 8 - □ 9 - □ 10 Extreme interference

In general, how much has pain interfered with your ability to get a good night’s sleep in the last week?

No interference □ 0 - □ 1 - □ 2 - □ 3 - □ 4 - □ 5 - □ 6 - □ 7 - □ 8 - □ 9 - □ 10 Extreme interference

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Widerström-Noga, E., Biering-Sørensen, F., Bryce, T.N. et al. The international spinal cord injury pain basic data set (version 3.0). Spinal Cord 61, 536–540 (2023). https://doi.org/10.1038/s41393-023-00919-w

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41393-023-00919-w

Search

Advanced search

Quick links