{
  "abstract": "Introduction The UK MS Register (UKMSR) has recruited people with Multiple Sclerosis (pwMS) over 13 years. Combining patient-reported outcomes with demographic and clinical data.Aim Describe the breadth and quality of longitudinally collected UKMSR dataMethods PwMS complete five core questionnaires bi-annually; EuroQOL Five Dimensions (EQ-5D), Hospital Anxiety and Depression Scale (HADS), MS Impact Scale-29 (MSIS-29), MS Walking Scale (MSWS), and Fatigue Severity Scale (FSS). Demographic and disease phenotype data are updated regularly. Engagement is evaluated using a proportion completed metric (pc), calculated as completed windows/available windows.Results In December 2024, the UKMSR has 15,909 participants (74.4% female) with 509,114 longitudinal records and 11,211 participants with 32637 cross-sectional only records. Phenotype breakdown: 53.7% relapsing-remitting 13.2% primary-progressive, 26.2% secondary-progressive, 2.26% benign, and 4.66% unknown. Questionnaire engagement:(Np: number of participants, Nr: number of records, pc):EQ-5D: Np: 15,059, Nr: 114,680, pc: 0.62HADS Np: 15,214, Nr: 116,330, pc: 0.62MSIS-29: Np: 15,050, Nr: 115,470, pc: 0.62MSWS-12: Np: 13,811, Nr: 105,408, pc: 0.61FSS Np: 10,224, Nr: 57,226, pc: 0.52Conclusion The UKMSR has established a robust longitudinal dataset tracking MS progression and quality-of-life outcomes. It is a vital resource for advancing MS research and shaping patient-centred care.r.m.middleton@swansea.ac.uk",
  "authors": [
    {
      "affiliations": [
        "Swansea University, Disease Registers Group"
      ],
      "name": "Rodgers Jeff"
    },
    {
      "affiliations": [
        "Swansea University, Disease Registers Group",
        "Department of Brain Sciences – Faculty of Medicine, Imperial College London"
      ],
      "name": "Nicholas Richard"
    },
    {
      "affiliations": [
        "Swansea University, Disease Registers Group"
      ],
      "name": "Witts James"
    },
    {
      "affiliations": [
        "Swansea University, Disease Registers Group"
      ],
      "name": "Knowles Sarah"
    },
    {
      "affiliations": [
        "Swansea University, Disease Registers Group"
      ],
      "name": "Craig Elaine"
    },
    {
      "affiliations": [
        "Swansea University, Disease Registers Group"
      ],
      "name": "Middleton Rodden"
    },
    {
      "affiliations": [
        "Various"
      ],
      "name": "Research Group UKMS Register"
    }
  ],
  "title": "123 A high quality repository of longitudinal multiple sclerosis data: the UK MS register",
  "uid": "c2ef5c2e-67cf-581c-a2a0-845c08f64650"
}