Comparison of the proportions of Secondary Progressive Multiple Sclerosis between three registries within the SPMS Research Collaboration Network (3977)
Citation Manager Formats
Make Comment
See Comments

Abstract
Objective: To identify and highlight differences in Secondary Progressive Multiple Sclerosis (SPMS) prevalence in three European multiple sclerosis (MS) registries.
Background: There is significant uncertainty and a lack of scientific information to enable characterisation of the prevalence and course of SPMS in different populations. We therefore sought to use real world data from three clinical MS registries in Europe to enhance current understanding.
Design/Methods: Data from MS registries in Germany, United Kingdom (UK) and Sweden were used. Inclusion criteria were patients with relapsing remitting MS (RRMS) or SPMS, age ≥ 18 years at the beginning of the study period (01/2016–10/2019). We included 21,552 German patients, 3,486 UK patients and 11,907 Swedish patients. The SPMS proportion was calculated at the end of the study period and only patients with at least one Expanded Disability Status Scale (EDSS) score during the study period were included. An SPMS decision tree classifier (Ramanujam, et al., 2016. P897, ECTRIMS), previously trained on Swedish data with age and EDSS as input variables, was used. The predicted phenotype from the classifier was compared with clinically assigned MS courses (RRMS vs SPMS).
Results: The clinically assigned SPMS proportion was 16.6% for Germany, 13.8% in the UK and 24.5% in Sweden. After applying the decision tree classifier to the patients’ latest EDSS score and age, the SPMS proportion increased to 26.2% in Germany, 35.6% in UK and 25.4% in Sweden.
Conclusions: There were striking differences in the proportion of clinically assigned SPMS between the three registries. By applying a classifier that allowed for reclassification of RRMS/SPMS patients, the SPMS proportions increased dramatically in the validation datasets and became more comparable. Our findings suggest that the size of the SPMS population may be substantially underestimated when clinically assigned courses are used. Further research is required to elaborate on these findings.
Disclosure: Dr. Forsberg has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Cubist IT AB. Dr. Forsberg holds stock and/or stock options in AstraZeneca. Dr. Stahmann has received research support from Biogen, Celgene, Merck and Novartis.Dr. Middleton has nothing to disclose. Dr. Ellenberger has nothing to disclose. Dr. Rodgers has nothing to disclose. Dr. Nicholas has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Biogen, Roche, Novartis. Dr. Nicholas has received research support from Biogen, Novartis and Roche. Dr. Ramanujam has nothing to disclose. Dr. Manouchehrinia has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Biogen. Dr. Pillai has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with IQVIA. Dr. Pillai holds stock and/or stock options in Novartis. Dr. Dobay has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with IQVIA. Dr. Lines has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Novartis. Dr. Hach has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Novartis Pharma AG.Dr. Glaser has nothing to disclose. Dr. Hillert has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Merck, Biogen, Novartis, Sandoz, Celgene, and Sanofi. Dr. Hillert has received research support from Biogen, Novartis, Merck, and Roche.
Letters: Rapid online correspondence
REQUIREMENTS
You must ensure that your Disclosures have been updated within the previous six months. Please go to our Submission Site to add or update your Disclosure information.
Your co-authors must send a completed Publishing Agreement Form to Neurology Staff (not necessary for the lead/corresponding author as the form below will suffice) before you upload your comment.
If you are responding to a comment that was written about an article you originally authored:
You (and co-authors) do not need to fill out forms or check disclosures as author forms are still valid
and apply to letter.
Submission specifications:
- Submissions must be < 200 words with < 5 references. Reference 1 must be the article on which you are commenting.
- Submissions should not have more than 5 authors. (Exception: original author replies can include all original authors of the article)
- Submit only on articles published within 6 months of issue date.
- Do not be redundant. Read any comments already posted on the article prior to submission.
- Submitted comments are subject to editing and editor review prior to posting.
You May Also be Interested in
Dr. Sevil Yaşar and Dr. Behnam Sabayan
► Watch
Related Articles
- No related articles found.