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- W2896986353 abstract "Background The time constraint of NHS care is difficult to reconcile with the comprehensive neurological assessment required to complete a mandatory EDSS for NHS England funded disease modifying treatment of people with multiple sclerosis (pwMS). We report our experience with parametric data collection in order to (i) inform DMT decisions and (ii) improve characterisation for recruitment of pwMS in clinical trials. Methods We implemented a battery consisting of the symbol digit modality test, 9-hole-peg-test, 25ft walking test and ABILHAND. pwMS were encouraged to sign up to the MS Register to record patient reported outcomes and ‘webEDSS’. Data from the MS Register and BartsMS Database were electronically linked. Results 334 pwMS at different disease stages (EDSS 0–8.5) have been assessed at least annually. Of these, 64% had a relapsing and 36% a progressive disease course. Clinically meaningful data was obtained and displayed in an engaging portal for interpretation by the clinical team and pwMS. Conclusion It’s feasible to implement multidimensional monitoring of pwMS to benefit (i) management of pwMS and (ii) trial recruitment, particularly for pwMS with EDSS >6.5. Longitudinal follow-up and data analysis is underway. Standardisation of a simple, regularly collected, dataset may improve performance assessment between centres." @default.
- W2896986353 created "2018-10-26" @default.
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- W2896986353 date "2018-09-13" @default.
- W2896986353 modified "2023-09-25" @default.
- W2896986353 title "WED 163 Monitoring for outcome assessment and trial recruitment of pwms" @default.
- W2896986353 doi "https://doi.org/10.1136/jnnp-2018-abn.72" @default.
- W2896986353 hasPublicationYear "2018" @default.
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