We would like to thank participants answering questionnaires about their MS on the UK MS Register website and also those who have given consent for their medical records to be linked to the UK MS Register. The data you have all provided has helped us, and many other researchers explore a wide variety of questions, using real world data. Below is a list of the scientific publications that have been produced so far.

1 Iyer P, Wiles K, Ismail A, et al. Developing evidence-based guidelines for the safety of symptomatic drugs in multiple sclerosis during pregnancy and breastfeeding: A systematic review and Delphi consensus. Mult Scler2023;:13524585221148094. doi:10.1177/13524585221148094

2 Forsberg L, Spelman T, Klyve P, et al. Proportion and characteristics of secondary progressive multiple sclerosis in five European registries using objective classifiers. Multiple Sclerosis Journal – Experimental, Translational and Clinical2023;9:205521732311535. doi:10.1177/20552173231153557

3 Frahm N, Fneish F, Ellenberger D, et al. SARS-CoV-2 vaccination in patients with multiple sclerosis in Germany and the United Kingdom: Gender-specific results from a longitudinal observational study. The Lancet Regional Health – Europe 2022;22:100502. doi:10.1016/j.lanepe.2022.100502

4 Rodgers J, Middleton R, Witts J, et al. 149 Down but not out repurposing depression treatments for multiple sclerosis with the UK MS register. Journal of Neurology, Neurosurgery & Psychiatry 2022;93:e2.105. doi:10.1136/jnnp-2022-abn2.193

5 Middleton R, Witts J, Craig E, et al. 138 Done in 16 Seconds: extracting research ready data from NHS clinical letters. J Neurol Neurosurg Psychiatry 2022;93:e2. doi:10.1136/jnnp-2022-abn2.182

6 Lerede A, Middleton R, Rodgers J, et al. 056 Online assessment and monitoring of cognitive decline in neurological conditions. Journal of Neurology, Neurosurgery & Psychiatry 2022;93:e2.3. doi:10.1136/jnnp-2022-abn2.100

7 Iyer P, Craig E, Brex P, et al. 135 The UK MS pregnancy register: baseline data from the first fifty enrolled patients. J Neurol Neurosurg Psychiatry 2022;93:e2. doi:10.1136/jnnp-2022-abn2.179

8 Meek C, das Nair R, Evangelou N, et al. Psychological Flexibility, Distress, and Quality of Life in Secondary Progressive Multiple Sclerosis: A Cross-sectional Study. Multiple Sclerosis and Related Disorders 2022;:104154. doi:10.1016/j.msard.2022.104154

9 Simpson-Yap S, Pirmani A, De Brouwer E, et al. Severity of COVID19 infection among patients with multiple sclerosis treated with interferon-β. Multiple Sclerosis and Related Disorders 2022;:104072. doi:10.1016/j.msard.2022.104072

10 Kamudoni P, Johns J, Cook KF, et al. A comparison of the measurement properties of the PROMIS-Fatigue (MS) 8a against legacy fatigue questionnaires. Multiple Sclerosis and Related Disorders 2022;:104048. doi:10.1016/j.msard.2022.104048

11 Moore H, Nair DKPS, Baster K, et al. Fatigue in Multiple Sclerosis: A UK MS-Register based study. Multiple Sclerosis and Related Disorders 2022;0. doi:10.1016/j.msard.2022.103954

12 Robinson R, Kee R, Ramsay S, et al. 105 Beyond diagnosis: patient perception of lumbar puncture for clinical management and/or research studies. J Neurol Neurosurg Psychiatry 2022;93:A133–A133. doi:10.1136/jnnp-2022-ABN.430

13 Ramsay S, Magill F, Goldsmith G, et al. 100 Making decisions and sharing information, the patient experience: the UK Multiple Sclerosis Register (UKMSR). J Neurol Neurosurg Psychiatry 2022;93:A132–A132. doi:10.1136/jnnp-2022-ABN.425

14  Nicholas R, Middleton R, Tuite-Dalton K, et al. 054 The individual costs of multiple sclerosis. J Neurol Neurosurg Psychiatry 2022;93:A29–30. doi:10.1136/jnnp-2022-ABN.92

15  Middleton R, Craig E, Rodgers W, et al. 096 COVID-19 in MS: clinically reported outcomes from the UK MS register. J Neurol Neurosurg Psychiatry 2022;93:A130–A130. doi:10.1136/jnnp-2022-ABN.421

16 Kamudoni P, Amtmann D, Johns J, et al. The validity, responsiveness, and score interpretation of the PROMISnq Physical Function – Multiple Sclerosis 15a short form in multiple sclerosis. Multiple Sclerosis and Related Disorders2022;62. doi:10.1016/j.msard.2022.103753

17  Huang Y, Baheerathan A, Middleton R, et al. 089 COVID-19 vaccinations in multiple sclerosis: UK MS register participant survey. J Neurol Neurosurg Psychiatry 2022;93:A128–A128. doi:10.1136/jnnp-2022-ABN.414

18  Garjani A, Middleton RM, Law GR, et al. COVID-19 and multiple sclerosis: An updated report of the community-based longitudinal UK MS Register study. J Neurol Neurosurg Psychiatry 2022;93:A93–A93. doi:10.1136/jnnp-2022-ABN.302

19 Ellenberger D, Parciak T, Brola W, et al. Comparison of employment among people with Multiple Sclerosis across Europe. Multiple Sclerosis Journal – Experimental, Translational and Clinical 2022;8:205521732210906. doi:10.1177/20552173221090653

20 Picariello F, Freeman J, Moss-Morris R. Defining routine fatigue care in Multiple Sclerosis in the United Kingdom: What treatments are offered and who gets them? Multiple Sclerosis Journal – Experimental, Translational and Clinical2022;8:205521732110722. doi:10.1177/20552173211072274

21 Garjani A, Middleton RM, Nicholas R, et al. Recovery From COVID-19 in Multiple Sclerosis: A Prospective and Longitudinal Cohort Study of the United Kingdom Multiple Sclerosis Register. Neurol Neuroimmunol Neuroinflamm2022;9:e1118. doi:10.1212/NXI.0000000000001118

22 Das J, Rog DJ, Middleton R, et al. The association between deprivation and the access to disease modifying therapies for multiple sclerosis: An England wide community-based study in the UK MS Register. Multiple Sclerosis and Related Disorders 2022;57:103474. doi:10.1016/j.msard.2021.103474

23 Simpson-Yap S, De Brouwer E, Kalincik T, et al. Associations of Disease-Modifying Therapies With COVID-19 Severity in Multiple Sclerosis. Neurology 2021;97:e1870–85. doi:10.1212/WNL.0000000000012753

24 Middleton R, Craig E, Rodgers W, et al. COVID-19 in Multiple Sclerosis: Clinically reported outcomes from the UK Multiple Sclerosis Register. Multiple Sclerosis and Related Disorders 2021;56:103317. doi:10.1016/j.msard.2021.103317

25 Busse M, Playle R, Latchem-Hastings J, et al. A web-based Life-style, Exercise and Activity intervention for People with Progressive Multiple Sclerosis: Results of a Single-Arm Feasibility Study. Multiple Sclerosis and Related Disorders2021;:103388. doi:10.1016/j.msard.2021.103388

26 Rodgers J, Friede T, Vonberg FW, et al. The impact of smoking cessation on multiple sclerosis disease progression. Brain 2021;:awab385. doi:10.1093/brain/awab385

2 Huang Y, Rodgers WJ, Middleton RM, et al. Willingness to receive a COVID-19 vaccine in people with multiple sclerosis – UK MS Register survey. Multiple Sclerosis and Related Disorders 2021;55:103175. doi:10.1016/j.msard.2021.103175

28 Simpson-Yap S, Brouwer ED, Kalincik T, et al. Associations of DMT therapies with COVID-19 severity in multiple sclerosis. International Journal of Epidemiology 2021;50:dyab168.604. doi:10.1093/ije/dyab168.604

29 Garjani A, Hunter R, Law GR, et al. Mental health of people with multiple sclerosis during the COVID-19 outbreak: A prospective cohort and cross-sectional case–control study of the UK MS Register. Mult Scler 2021;:135245852110204. doi:10.1177/13524585211020435

30 Nair R das, Hunter R, Garjani A, et al. Challenges of developing, conducting, analysing and reporting a COVID-19 study as the COVID-19 pandemic unfolds: an online co-autoethnographic study. BMJ Open 2021;11:e048788. doi:10.1136/bmjopen-2021-048788

31 Kamudoni P, Johns J, Cook KF, et al. Standardizing fatigue measurement in multiple sclerosis: the validity, responsiveness and score interpretation of the PROMIS SF v1.0 – Fatigue (MS) 8a. Multiple Sclerosis and Related Disorders 2021;:103117. doi:10.1016/j.msard.2021.103117

32 Garjani A, Middleton RM, Hunter R, et al. COVID-19 is associated with new symptoms of multiple sclerosis that are prevented by disease modifying therapies. Multiple Sclerosis and Related Disorders 2021;:102939. doi:10.1016/j.msard.2021.102939

33 Goodwin E, Hawton A, Whitty JA, et al. Exploring the Factors that Influence Workforce Participation for People with Multiple Sclerosis: A Discrete Choice Experiment. J Occup Rehabil Published Online First: 27 January 2021. doi:10.1007/s10926-020-09952-5

34 Veldhuijzen van Zanten J, Douglas MR, Ntoumanis N. Fatigue and fluctuations in physical and psychological wellbeing in people with multiple sclerosis: A longitudinal study. Multiple Sclerosis and Related Disorders2021;47:102602. doi:10.1016/j.msard.2020.102602

35 Vickaryous N, Jitlal M, Jacobs BM, et al. Remote testing of vitamin D levels across the UK MS population—A case control study. PLoS ONE 2020;15:e0241459. doi:10.1371/journal.pone.0241459

36 Coe S, Tektonidis T, Coverdale C, et al. A cross sectional assessment of nutrient intake and the association of the inflammatory properties of nutrients and foods with symptom severity, in a large cohort from the UK Multiple Sclerosis Registry. Nutrition Research 2020;:S0271531720305716. doi:10.1016/j.nutres.2020.11.006

37 Rod M Middleton, Pearson OR, Ingram G, et al. A Rapid Electronic Cognitive Assessment Measure for Multiple Sclerosis: Validation of Cognitive Reaction, an Electronic Version of the Symbol Digit Modalities Test. J Med Internet Res 2020;22:e18234. doi:10.2196/18234

38 Evangelou N, Garjani A, dasNair R, et al. Self-diagnosed COVID-19 in people with multiple sclerosis: a community-based cohort of the UK MS Register. J Neurol Neurosurg Psychiatry 2020;:jnnp-2020-324449. doi:10.1136/jnnp-2020-324449

39 Peeters LM, Parciak T, Walton C, et al. COVID-19 in people with multiple sclerosis: A global data sharing initiative. Mult Scler 2020;:135245852094148. doi:10.1177/1352458520941485

40 Allen-Philbey K, Middleton R, Tuite-Dalton K, et al. Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement? Front Neurol 2020;11:464. doi:10.3389/fneur.2020.00464

41 Salter A, Stahmann A, Ellenberger D, et al. Data Harmonization for Collaborative Research among MS Registries: A Case Study in Employment. Mult Scler 2020;:135245852091049. doi:10.1177/1352458520910499

42 Nicholas RS, Heaven ML, Middleton RM, et al. Personal and Societal Costs of Multiple Sclerosis in the UK: A Population-Based MS Registry Study. Multiple Sclerosis Journal – Experimental, Translational and Clinical2020;6:205521732090172. doi:10.1177/2055217320901727

43 Lincoln NB, Bradshaw LE, Constantinescu CS, et al. Cognitive Rehabilitation for Attention and Memory in People with Multiple Sclerosis: A Randomized Controlled Trial (CRAMMS). Clin Rehabil 2019;:026921551989037. doi:10.1177/0269215519890378

44 Glaser A, Stahmann A, Meissner T, et al. Multiple Sclerosis Registries in Europe – an Updated Mapping Survey. Multiple Sclerosis and Related Disorders Published Online First: October 2018. doi:10.1016/j.msard.2018.09.032

45  Middleton RM, Rodgers WJ, Chataway J, et al. Validating the portal population of the United Kingdom Multiple Sclerosis Register. Multiple Sclerosis and Related Disorders 2018;24:3–10. doi:10.1016/j.msard.2018.05.015

46 Goodwin E, Green C, Hawton A. Health State Values Derived from People with Multiple Sclerosis for a Condition-Specific Preference-Based Measure: Multiple Sclerosis Impact Scale–Eight Dimensions–Patient Version (MSIS-8D-P). Value in Health Published Online First: June 2018. doi:10.1016/j.jval.2018.03.019

47 Dennison L, Brown M, Kirby S, et al. Do People with Multiple Sclerosis Want to Know Their Prognosis? A UK Nationwide Study. PLOS ONE 2018;13:e0193407. doi:10.1371/journal.pone.0193407

48 Campbell E, Coulter E, Mattison P, et al. Access, Delivery and Perceived Efficacy of Physiotherapy and Use of Complementary and Alternative Therapies by People with Progressive Multiple Sclerosis in the United Kingdom: An Online Survey. Multiple Sclerosis and Related Disorders Published Online First: January 2017. doi:10.1016/j.msard.2017.01.002

49 Campbell E, Coulter EH, Mattison P, et al. Access to and Use of Clinical Services and Disease-Modifying Therapies by People with Progressive Multiple Sclerosis in the United Kingdom. Int J MS Care 2017;19:275–82. doi:10.7224/1537-2073.2017-022

50 Baker D, Anandhakrishnan A, Tuite-Dalton KA, et al. How to Refer to People with Disease in Research Outputs: The Disconnection between Academic Practise and That Preferred by People with Multiple Sclerosis. Multiple Sclerosis and Related Disorders 2016;10:127–33. doi:10.1016/j.msard.2016.09.007

51 Balbuena LD, Middleton RM, Tuite-Dalton K, et al. Sunshine, Sea, and Season of Birth: MS Incidence in Wales. PLOS ONE 2016;11:e0155181. doi:10.1371/journal.pone.0155181

52 Flachenecker P, Buckow K, Pugliatti M, et al. Multiple Sclerosis Registries in Europe – Results of a Systematic Survey. Multiple Sclerosis Journal 2014;20:1523–32. doi:10.1177/1352458514528760

53 Jones KH, Jones PA, Middleton RM, et al. Physical Disability, Anxiety and Depression in People with MS: An Internet-Based Survey via the UK MS Register. PLoS ONE 2014;9:e104604. doi:10.1371/journal.pone.0104604

54 Osborne LA, Middleton RM, Jones KH, et al. Desirability and Expectations of the UK MS Register: Views of People with MS. International Journal of Medical Informatics 2013;82:1104–10. doi:10.1016/j.ijmedinf.2013.07.005

55 Jones KH, Ford DV, Jones PA, et al. How People with Multiple Sclerosis Rate Their Quality of Life: An EQ-5D Survey via the UK MS Register. PLoS ONE 2013;8:e65640. doi:10.1371/journal.pone.0065640

56 Jones KH, Ford DV, Jones PA, et al. The Physical and Psychological Impact of Multiple Sclerosis Using the MSIS-29 via the Web Portal of the UK MS Register. PLoS ONE 2013;8:e55422. doi:10.1371/journal.pone.0055422

57 Osborne LA, Lockhart-Jones HM, Middleton RM, et al. Identifying and Addressing the Barriers to the Use of an Internet-Register for Multiple Sclerosis: International Journal of Healthcare Information Systems and Informatics2013;8:1–16. doi:10.4018/jhisi.2013010101

58 Noble JG, Osborne LA, Jones KH, et al. Commentary on ‘Disability Outcome Measures in Multiple Sclerosis Clinical Trials’. Multiple Sclerosis Journal 2012;18:1718–20. doi:10.1177/1352458512457847

59 Jones KH, Ford DV, Jones PA, et al. A Large-Scale Study of Anxiety and Depression in People with Multiple Sclerosis: A Survey via the Web Portal of the UK MS Register. PLoS ONE 2012;7:e41910. doi:10.1371/journal.pone.0041910

60 Osborne LA, Noble JG, Lockhart-Jones HM, et al. Sources of Discovery, Reasons for Registration, and Expectations of an Internet-Based Register for Multiple Sclerosis: Visualisations and Explorations of Word Uses and Contexts. International Journal of Healthcare Information Systems and Informatics 2012;7:27–43. doi:10.4018/jhisi.2012070103

61 Ford DV, Jones KH, Middleton RM, et al. The Feasibility of Collecting Information from People with Multiple Sclerosis for the UK MS Register via a Web Portal: Characterising a Cohort of People with MS. BMC Medical Informatics and Decision Making 2012;12:73. doi:10.1186/1472-6947-12-73