MS Society Infographic
2023
Introduction
The UK MS Register collects ‘real world’ data from people with MS and their clinical teams about various aspects of the disease. Amongst the most important of these are an effort to show what MS ‘looks like’ in the UK.
The Register does not have 100% completion in any part of the UK, however we have fairly good ‘representative sample’ of the population and we are aware we have never shared this ‘snapshot’ widely outside of publications in peer reviewed journals.
In the interests of informing anyone affected by MS in the UK we aim to produce an Annual infographic that shows useful data from our clinical and participant reported data over the years.
Recruitment in 2013 compared to 2023
Portal recruitment in 2013 and 2023. Portal users register via the UK MS Register website and self-report their data.
Clinical recruitment in 2013 and 2023. Clinical users register at their clinical sites and data is inputted from information in participant’s medical records.
Accumulative recruitment
Portal - Accumulative recruitment from 2011 to 2023 in the portal population by gender. This graph shows the continual recruitment of participants to the web portal of the UK MS Register and how this has grown over the years.
Clinical - Accumulative recruitment from 2011 to 2023 in the clinical population by gender
Core questionnaires
Number of users completing core questionnaires each window on the web portal
Ethnicity
Ethnicity in the portal and clinical populations (where ethnicity is stated)
Ethnic minorities in the portal population
Percentage of known ethnicities in the portal and clinical populations
Disability measured by expanded disability status scale (EDSS)
Portal webEDSS by age for men and women
Clinical EDSS by age for men and women
Percentage of portal users in different webEDSS bands
Percentage of clinical users in different EDSS bands
Disease modifying therapies (DMTs)
Percentage of people in portal population on treatment who are currently taking a highly active DMT, compared to a normally active DMT, by region
Percentage of people in clinical population on each type of highly active DMT and normally active DMT
Symptoms
Most common symptoms reported in the portal population
Portal and clinical populations
Portal population from 2018 - 2023
This shows numbers of participants that have signed up to the MS Register between 2018 and 2023, you can see the n (the total number of people registering per year) has fluctuated from year to year - most noticeably seeing a spike during the start of the pandemic (2020).
Its interesting to note that the (average/mean) age at registration has stayed between the ages of 47-50 over these years but mean ages at onset(33.4-35.2) and diagnosis of MS (37.9-39.6) is more static. This can truly be seen by looking at the average time to diagnosis across 6 years of data remaining at 3.9 to 4.9 years.
As would be expected, female gender remains dominant with over >70% of participants reporting this and the majority reporting that they have relapsing remitting disease.
| RegYear | 2018 | 2019 | 2020 | 2021 | 2022 | 2023 | |
|---|---|---|---|---|---|---|---|
| n | 1420 | 1526 | 2239 | 846 | 1831 | 1280 | |
| AgeAtReg (mean (SD)) | 49.13 (11.95) | 48.79 (12.89) | 47.63 (11.94) | 47.10 (12.96) | 48.30 (13.09) | 50.15 (12.65) | |
| OnsetAge (mean (SD)) | 35.04 (10.89) | 34.60 (11.03) | 34.01 (10.50) | 33.43 (10.54) | 34.62 (11.02) | 35.19 (11.18) | |
| DiagnosisAge (mean (SD)) | 39.43 (11.09) | 38.69 (11.29) | 37.86 (10.62) | 38.34 (11.22) | 38.93 (11.10) | 39.58 (11.45) | |
| TimeToDiagnosis (mean (SD)) | 4.41 (6.25) | 4.12 (6.01) | 3.87 (5.97) | 4.93 (7.25) | 4.34 (6.48) | 4.44 (6.50) | |
| Gender (%) | Female | 1051 (74.1) | 1137 (74.7) | 1753 (78.6) | 649 (77.0) | 1395 (76.5) | 898 (70.2) |
| Male | 368 (25.9) | 386 (25.3) | 477 (21.4) | 194 (23.0) | 429 (23.5) | 381 (29.8) | |
| MSAtDiagnosis (%) | PPMS | 150 (10.6) | 157 (10.3) | 168 ( 7.5) | 87 (10.3) | 192 (10.5) | 229 (17.9) |
| RRMS | 1073 (75.6) | 1189 (77.9) | 1900 (84.9) | 684 (80.9) | 1443 (78.8) | 919 (71.8) | |
| SPMS | 98 ( 6.9) | 69 ( 4.5) | 61 ( 2.7) | 26 ( 3.1) | 77 ( 4.2) | 56 ( 4.4) | |
| Unknown | 99 ( 7.0) | 111 ( 7.3) | 110 ( 4.9) | 49 ( 5.8) | 119 ( 6.5) | 76 ( 5.9) | |
| MSTypeNow (%) | Benign | 22 ( 1.5) | 22 ( 1.4) | 27 ( 1.2) | 9 ( 1.1) | 21 ( 1.1) | 10 ( 0.8) |
| PPMS | 144 (10.1) | 151 ( 9.9) | 156 ( 7.0) | 92 (10.9) | 190 (10.4) | 225 (17.6) | |
| RRMS | 772 (54.4) | 913 (59.8) | 1597 (71.3) | 568 (67.1) | 1181 (64.5) | 633 (49.5) | |
| SPMS | 396 (27.9) | 369 (24.2) | 356 (15.9) | 131 (15.5) | 333 (18.2) | 335 (26.2) | |
| Unknown/Not recorded | 86 ( 6.1) | 71 ( 4.7) | 103 ( 4.6) | 46 ( 5.4) | 106 ( 5.8) | 77 ( 6.0) | |
| ConvertedToSPMS (%) | no | 1137 (80.4) | 1262 (82.7) | 1965 (87.8) | 743 (87.8) | 1596 (87.2) | 1019 (79.6) |
| yes | 277 (19.6) | 264 (17.3) | 274 (12.2) | 103 (12.2) | 235 (12.8) | 261 (20.4) | |
| TimeToSP (mean (SD)) | 13.44 (8.23) | 13.01 (8.31) | 14.13 (8.34) | 14.14 (9.71) | 13.73 (8.35) | 14.53 (8.74) | |
| DMT (%) | Highly active | 142 (31.9) | 192 (38.6) | 338 (36.7) | 185 (46.5) | 403 (50.6) | 232 (51.4) |
| Normally active | 303 (68.1) | 305 (61.4) | 583 (63.3) | 213 (53.5) | 394 (49.4) | 219 (48.6) |
Clinical population from 2018 - 2023
The population of ‘patients’ that are recruited through informed consent at 48 NHS clinical sites across the UK looks remarkably similar to participants who sign up to via the portal. There is an even more marked effect of the pandemic in the n (numbers consented) as the years pass - 2150 people were recruited in 2019 and this drops markedly in 2020 to just 610.
This reflects both the restrictions on travelling to hospitals and the lack of NHS staff time to carry out recruitment to research such as the MS Register. Other data across the years is similar to the portal population discussed above for age at registration, onset, time to diagnosis and gender.
There is a difference in the proportion of people with relapsing disease though standing between 67-81% of the consented population between 2018-23. This probably reflects that the majority of the population consented to the Register is when they attend for Disease Modifying Treatments.
| RegYear | 2018 | 2019 | 2020 | 2021 | 2022 | 2023 | |
|---|---|---|---|---|---|---|---|
| n | 3058 | 2150 | 610 | 410 | 579 | 1012 | |
| AgeAtReg (mean (SD)) | 49.62 (12.74) | 48.67 (13.55) | 50.41 (12.61) | 47.56 (13.22) | 49.74 (13.18) | 50.60 (13.61) | |
| OnsetAge (mean (SD)) | 35.30 (11.12) | 35.16 (11.31) | 35.54 (11.02) | 35.42 (11.82) | 35.59 (11.05) | 36.77 (11.82) | |
| DiagnosisAge (mean (SD)) | 38.63 (11.46) | 38.34 (11.65) | 39.59 (11.83) | 38.40 (12.07) | 39.09 (11.50) | 39.31 (11.96) | |
| TimeToDiagnosis (mean (SD)) | 3.49 (5.89) | 3.37 (5.62) | 4.20 (6.89) | 3.22 (5.25) | 3.82 (6.16) | 2.85 (5.07) | |
| Gender (%) | Female | 2180 (72.1) | 1531 (71.4) | 446 (73.4) | 287 (70.2) | 411 (71.6) | 717 (70.9) |
| Male | 844 (27.9) | 612 (28.6) | 162 (26.6) | 122 (29.8) | 163 (28.4) | 294 (29.1) | |
| MSAtDiagnosis (%) | Not recorded | 276 ( 9.0) | 12 ( 0.6) | 5 ( 0.8) | <5 | 36 ( 6.2) | 146 (14.4) |
| Other | 81 ( 2.6) | 53 ( 2.5) | 20 ( 3.3) | 15 ( 3.7) | 19 ( 3.3) | 44 ( 4.3) | |
| PPMS | 279 ( 9.1) | 181 ( 8.4) | 60 ( 9.8) | 36 ( 8.8) | 47 ( 8.1) | 76 ( 7.5) | |
| RRMS | 2279 (74.5) | 1800 (83.7) | 495 (81.1) | 343 (83.7) | 438 (75.6) | 703 (69.5) | |
| SPMS | 143 ( 4.7) | 104 ( 4.8) | 30 ( 4.9) | 15 ( 3.7) | 39 ( 6.7) | 43 ( 4.2) | |
| MSTypeNow (%) | Benign | 10 ( 0.3) | 8 ( 0.4) | <5 | <5 | 7 ( 1.2) | <5 |
| Not recorded | 354 (11.6) | 256 (11.9) | 47 ( 7.7) | 9 ( 2.2) | 75 (13.0) | 244 (24.1) | |
| PPMS | 270 ( 8.8) | 164 ( 7.6) | 54 ( 8.9) | 42 (10.2) | 45 ( 7.8) | 75 ( 7.4) | |
| RRMS | 1945 (63.6) | 1401 (65.2) | 422 (69.2) | 318 (77.6) | 374 (64.6) | 592 (58.5) | |
| SPMS | 479 (15.7) | 321 (14.9) | 85 (13.9) | 39 ( 9.5) | 78 (13.5) | 100 ( 9.9) | |
| ConvertedToSPMS (%) | no | 2634 (86.1) | 1857 (86.4) | 535 (87.7) | 380 (92.7) | 508 (87.7) | 915 (90.4) |
| yes | 424 (13.9) | 293 (13.6) | 75 (12.3) | 30 ( 7.3) | 71 (12.3) | 97 ( 9.6) | |
| TimeToSP (mean (SD)) | 14.22 (9.65) | 14.55 (9.25) | 17.50 (11.98) | 15.68 (10.73) | 16.85 (11.15) | 15.85 (10.72) | |
| DMT (%) | Highly active | 440 (33.8) | 286 (33.2) | 101 (37.5) | 198 (71.0) | 168 (56.8) | 269 (62.7) |
| Normally active | 861 (66.2) | 575 (66.8) | 168 (62.5) | 81 (29.0) | 128 (43.2) | 160 (37.3) |
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