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 PENDING
Middleton RM, 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
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 Clinical 2020;6:205521732090172. doi:10.1177/2055217320901727
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
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
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
Osborne LA, Gareth Noble J, Maramba IDC, et al. Outcome Measures for Multiple Sclerosis. Physical Therapy Reviews 2014;19:24–38. doi:10.1179/1743288X13Y.0000000094
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
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
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
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
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
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
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 33AD;7:27–43. doi:10.4018/jhisi.2012070103
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 Informatics 31AD;8:1–16. doi:10.4018/jhisi.2013010101
COVID-19 Related Publications
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 Neuroinflamm_2022;9:e1118. doi:10.1212/NXI.0000000000001118
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
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
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
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;:13524585211020436. doi:10.1177/13524585211020435
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
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
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
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
Collaborators' Research
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;:13524585211020436. doi:10.1177/13524585211020435
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
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
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
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
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;47:102602. doi: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;15:e0241459. doi: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;:S0271531720305716. doi:10.1016/j.nutres.2020.11.006
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
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
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
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
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
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
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
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
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
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
To read about the research that has been done on the UK MS Register in more layman’s terms, have a look at the MS Register news pages!