UK MS Register Publications

Publications, Research

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:

UK MS Register Team Publications

Total: 22

Year Title Journal Authors DOI
2023 University education facilitates uptake of disease-modifying therapies for multiple sclerosis: A community-based study using the UK MS Register Multiple Sclerosis Journal Das J, Rog DJ, Middleton RM, et al. 10.1177/13524585231221411
2023 Comparing the Pathology, Clinical, and Demographic Characteristics of Younger and Older‐Onset Multiple Sclerosis. Annals of Neurology Knowles S, Middleton R, Cooze B, et al. 10.1002/ana.26843
2023 The impact of healthcare systems on the clinical diagnosis and disease-modifying treatment usage in relapse-onset multiple sclerosis: a real-world perspective in five registries across Europe. Ther Adv Neurol Disord Nicholas R, Rodgers J, Witts J, et al. 10.1177/17562864231198963
2023 Patient-reported outcomes in multiple sclerosis: a prospective registry cohort study. Brain Communications Lerede A, Rodgers J, Middleton RM, et al. 10.1093/braincomms/fcad199
2022 Recovery From COVID-19 in Multiple Sclerosis: A Prospective and Longitudinal Cohort Study of the United Kingdom Multiple Sclerosis Register. Neurol Neuroimmunol Neuroinflamm Garjani A, Middleton RM, Nicholas R, et al. 10.1212/NXI.0000000000001118
2021 COVID-19 in Multiple Sclerosis: Clinically reported outcomes from the UK Multiple Sclerosis Register. Multiple Sclerosis and Related Disorders Middleton R, Craig E, Rodgers W, et al. 10.1016/j.msard.2021.103317
2021 The impact of smoking cessation on multiple sclerosis disease progression. Brain Rodgers J, Friede T, Vonberg FW, et al. 10.1093/brain/awab385
2021 COVID-19 is associated with new symptoms of multiple sclerosis that are prevented by disease modifying therapies. Multiple Sclerosis and Related Disorders Garjani A, Middleton RM, Hunter R, et al. doi:10.1016/j.msard.2021.102939
2021 Willingness to receive a COVID-19 vaccine in people with multiple sclerosis – UK MS Register survey. Multiple Sclerosis and Related Disorders Huang Y, Rodgers WJ, Middleton RM, et al. 10.1016/j.msard.2021.103175
2020 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 Rod M Middleton, Pearson OR, Ingram G, et al. 10.2196/18234
2020 Personal and Societal Costs of Multiple Sclerosis in the UK: A Population-Based MS Registry Study. Multiple Sclerosis Journal – Experimental, Translational and Clinical Nicholas RS, Heaven ML, Middleton RM, et al. 10.1177/2055217320901727
2018 Validating the portal population of the United Kingdom Multiple Sclerosis Register. Multiple Sclerosis and Related Disorders Middleton RM, Rodgers WJ, Chataway J, et al. 10.1016/j.msard.2018.05.015
2016 Sunshine, Sea, and Season of Birth: MS Incidence in Wales. PLOS ONE Balbuena LD, Middleton RM, Tuite-Dalton K, et al. 10.1371/journal.pone.0155181
2014 Physical Disability, Anxiety and Depression in People with MS: An Internet-Based Survey via the UK MS Register. PLoS ONE Jones KH, Jones PA, Middleton RM, et al. 10.1371/journal.pone.0104604
2013 Desirability and Expectations of the UK MS Register: Views of People with MS. International Journal of Medical Informatics Osborne LA, Middleton RM, Jones KH, et al. 10.1016/j.ijmedinf.2013.07.005
2013 How People with Multiple Sclerosis Rate Their Quality of Life: An EQ-5D Survey via the UK MS Register. PLoS ONE Jones KH, Ford DV, Jones PA, et al. 10.1371/journal.pone.0065640
2013 The Physical and Psychological Impact of Multiple Sclerosis Using the MSIS-29 via the Web Portal of the UK MS Register. PLoS ONE Jones KH, Ford DV, Jones PA, et al. 10.1371/journal.pone.0055422
2013 Identifying and Addressing the Barriers to the Use of an Internet-Register for Multiple Sclerosis. International Journal of Healthcare Information Systems and Informatics Osborne LA, Lockhart-Jones HM, Middleton RM, et al. 10.4018/jhisi.2013010101
2012 Commentary on ‘Disability Outcome Measures in Multiple Sclerosis Clinical Trials’. Multiple Sclerosis Journal Noble JG, Osborne LA, Jones KH, et al. 10.1177/1352458512457847
2012 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 Jones KH, Ford DV, Jones PA, et al. 10.1371/journal.pone.0041910
2012 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 Osborne LA, Noble JG, Lockhart-Jones HM, et al. 10.4018/jhisi.2012070103
2012 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 Ford DV, Jones KH, Middleton RM, et al. 10.1186/1472-6947-12-73

Publications from Collaborations

Authors Title Journal Year DOI
Giovannoni G, Ford H, Schmierer K, Middleton R, et al. MS care: integrating advanced therapies and holistic management. Frontiers in Neurology 2024 10.3389/fneur.2023.1286122
Das J, Rog DJ, Middleton R, et al. University education facilitates uptake of disease-modifying therapies for multiple sclerosis: A community-based study using the UK MS Register. Mult Scler 2024 10.1177/13524585231221411
Parciak T, Geys L, Helme A, et al. Introducing a core dataset for real-world data in multiple sclerosis registries and cohorts: Recommendations from a global task force. Mult Scler 2023 10.1177/13524585231216004
Jacobs BM, Daruwalla C, McKeon MO, et al. Early depressive symptoms and disability accrual in Multiple Sclerosis: a UK MS Register study. Sci Rep 2023 10.1038/s41598-023-08227-4
Jacobs BM, Schalk L, Dunne A, et al. ADAMS project: a genetic Association study in individuals from Diverse Ancestral backgrounds with Multiple Sclerosis based in the UK. BMJ Open 2023 10.1136/bmjopen-2020-071656
Webb EJD, Meads D, Eskytė I, et al. Decision Making About Disease-Modifying Treatments for Relapsing-Remitting Multiple Sclerosis: Stated Preferences and Real-World Choices. Patient 2023 10.1007/s40271-023-00622-1
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 Scler 2023 10.1177/13524585221148094
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 Clinical 2023 10.1177/205521732311535
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 10.1016/j.lanepe.2022.100502
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 10.1016/j.msard.2022.104154
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 10.1016/j.msard.2022.104072
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 10.1016/j.msard.2022.104048
Moore H, Nair DKPS, Baster K, et al. Fatigue in Multiple Sclerosis: A UK MS-Register based study. Multiple Sclerosis and Related Disorders 2022 10.1016/j.msard.2022.103954
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 Disorders 2022 10.1016/j.msard.2022.103753
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 10.1177/205521732210906
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 Clinical 2022 10.1177/205521732110722
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 10.1016/j.msard.2022.103474
Simpson-Yap S, De Brouwer E, Kalincik T, et al. Associations of Disease-Modifying Therapies With COVID-19 Severity in Multiple Sclerosis. Neurology 2021 10.1212/WNL.0000000000012862
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 10.1093/ije/dyab168.604
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 10.1177/135245852110204
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 10.1136/bmjopen-2021-048788
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 10.1016/j.msard.2021.103117
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 2021 10.1007/s10926-020-09952-5
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 Disorders 2021 10.1016/j.msard.2020.102602
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 10.1371/journal.pone.0241459
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 10.1016/j.nutres.2020.10.005
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 10.1136/jnnp-2020-324449
Peeters LM, Parciak T, Walton C, et al. COVID-19 in people with multiple sclerosis: A global data sharing initiative. Mult Scler 2020 10.1177/135245852094148
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 10.3389/fneur.2020.00464
Salter A, Stahmann A, Ellenberger D, et al. Data Harmonization for Collaborative Research among MS Registries: A Case Study in Employment. Mult Scler 2020 10.1177/135245852091049
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 10.1186/s13063-015-1016-3
Glaser A, Stahmann A, Meissner T, et al. Multiple Sclerosis Registries in Europe – an Updated Mapping Survey. Multiple Sclerosis and Related Disorders 2018 10.1016/j.msard.2018.09.032
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 2018 10.1016/j.jval.2018.03.019
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 10.1371/journal.pone.0193407
Campbell E, Coulter E, Mattison P, et al. Access, Delivery and Perceived Efficacy of Physiotherapy and Multiple Sclerosis and Related Disorders 1027 10.1016/j.msard.2017.01.002
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 10.7224/1537-2073.2017-022
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 10.1016/j.msard.2016.09.007
Flachenecker P, Buckow K, Pugliatti M, et al. Multiple Sclerosis Registries in Europe – Results of a Systematic Survey. Multiple Sclerosis Journal 2014 https://doi.org/10.1177/1352458514528760