SCI Care: What Really Matters
SCI Care: What Really Matters
Opportunities for Data Standardization to Enhance Spinal Cord Injury Research
Key points:
- International collaboration is required to produce research that can be interpreted and applied across different regions
- As outcome measures and collection methods continue to evolve a methodical approach to updating research best practices is required
- A larger focus should be on including the thoughts of persons with lived SCI experience when defining research questions
Speakers
Dr. Fin Biering-Sørensen
Dr Michael Fehlings
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Hello, I'm Michael Phalings, Professor of Neurosurgery at the University of Toronto, and I'm editor-in-chief of Spinal Cord, which is a signature journal of the International Spinal Cord Society or ISCOS in a Springer Nature uh publication. And um each uh month we have uh a podcast where we uh uh feature an editor's choice article from uh spinal cord. And today we have a particular uh privilege to uh host uh Finn Bering Sorensen, uh, who is uh Emeritus Professor of Neurorehabilitation at the University of Copenhagen in Denmark and is also a past president of both ISCOS and NOSCOS, at a very uh distinguished clinician scientist and researcher. And uh Professor uh Bering Sorensen was the uh 2025 uh Sir Ludwig Goodman uh lecturer at the ISCOS uh meeting in Gothenburg, uh Sweden, gave a fantastic uh uh talk and has recently put together an article based on his uh uh uh lecture, which is entitled The Goodman Lecture 2025: Standardization of Data Collection in Individuals with Spinal Cord Injury. Uh so Finn, thank you so much uh uh for joining us. And I wonder if perhaps you could just briefly uh uh summarize uh the key points from this uh excellent article.
SPEAKER_00:Thank you so much, Mike. Well, be able to have really good data, you know, for the future and for prevention and treatment. We need to have studies which is which are cross-ing different units and countries, trying for individuals. And this means you know, to have more possibilities to generalize our results, we need to standardize data so we can use them across different studies and different uh centers. And um, in the article, I just try to give a little bit uh of introduction to some of these standardizations of today. Actually, it started uh many years ago where Hans Frankel from Stoker Mandel he um he made what we call the Frankel classification injury association classification, which afterwards became the international um standards for neurological classification of spine cord injury, which is made together with ISCAS as well. And so this was really the first kind of standardization which got worldwide um dissemination, and in that sense, it also paved the road, you know, for more standardization. And also, since then, also uh within the frame of Asia, the Isafski, which is on the remaining function of autonomic function, has been uh developed. And then you can say within activities of daily living as well, we have had a very good development from Israel, where Ambraham Katz and his group actually developed the spying court independence measure, which has also over the years developed and now is in false uh version. And on this background, also parallel, uh, the international data sets started. And uh that was actually in your own country in Canada, in Vancouver, back in the early 2000s, it is it was started. And with this, we have tried to include people from all over the world, either as participants in the data set development or as reviewers. And that is a very important thing that we really try to have all the reviews done by as many people as possible, and also include organizations, etc., who are involved in that particular area the data set cover. And in this way, now they have been developed what we call a core data set, and that data set is what we can say the first table, which should be included in every article describing the demography and so on of the population you have. And we also try to make it so it is recorded in a specific way, as also spinal cord actually has adopted in its guidelines basic data sets, which are including, for instance, lower urinary tract function, bowel function, pain, etc. And then we also have some extended data sets. So the article describes a little bit of this development, and then also finally give some ideas, you know, that for the future you may have also uh big data included and so on. But still, you know, the more standardized you have the data, the easier it will also be uh be to use even big data, um, data um activities on these data. So this is what it has been, and we hope it will improve global data comparability, you know, if you if you use these. And um, this will also enhance the possibilities for us to give a better prevention and treatment. That's at least the aim of it.
SPEAKER_01:Thank you. That's a very comprehensive uh summary, and uh just want to uh also point out um to the viewers of this uh podcast that uh Professor Bering Sorensen put together a very nice um uh uh visual abstract um uh of the of the article, which really provides a nutshell summary, and you nicely summarized uh the article into four domains uh one of global consensus development, key standardized uh measures, uh then data ecosystem expansion, and finally um uh impacts. A very nice uh summary. Um I I wonder uh if you could then perhaps just um uh maybe expand a little bit further on what you see as the anticipated future directions and the potential clinical impact of this work.
SPEAKER_00:I I think you know the future directions will be that the more centers who actually work together, uh the more registries who actually take up these, and the more also um electric um electronic medical record systems take these into their systems, we will have a greater possibility to compare these data, and by that we will have much, much greater possibilities new ways, and I myself hope, for instance, that personalized can help us, and in particular in two areas that I believe we have possibilities if we do this for the future. This is in pain and for spasticity treatment. In these areas, we really need some more data, and here also big data, you know, and using those kind of uh possibilities I hope will really give a breakthrough for for these two areas, which is a big, big problem for many of individuals with spinal cord injury today.
SPEAKER_01:Certainly, I think the uh the collection and the standardization of data uh at an international level is is extremely important and can have considerable impact. So thank you. Um so um I want to um thank again uh Professor Finn Bering Sorensen, Emerita's professor of neural rehabilitation at the University of Copenhagen in Denmark, for summarizing um his excellent uh article, which is based on his um Gutmann plenary lecture uh from 2025, the ISCOS uh meeting. I'm Professor Michael Falings, editor-in-chief of Spinal Cord, and um uh this will uh conclude our podcast. I would uh encourage all the viewers to to read um uh Professor Um uh uh Finbaring uh Sorensen's excellent uh uh article, and uh please stay tuned for future podcasts. Thank you.