The UK Multiple Sclerosis Register

• Research type

  Research Database

• IRAS ID

  209558

• Contact name

  David V Ford

• Contact email

  d.v.ford@swansea.ac.uk

• Research summary

  The UK MS Register

• REC name

  South West - Central Bristol Research Ethics Committee

• REC reference

  16/SW/0194

• Date of REC Opinion

  2 Aug 2016

• REC opinion

  Favourable Opinion

• Data collection arrangements

  The data to be stored as part of the Register is dependent on the source:
  Data from clinical sites (with informed consent)
  Demographics, Visit date, Onset Date, Diagnosis Date, MS Type, MS Type at Visit, MS Medications, Previous MS Medications,Number of Relapses (if applicable), Severity (if applicable) Conversion to SP (if applicable) EDSS Score, Walking Distance, Walking Time, Walking Method,

  Onset localisation, Onset Symptoms

  Additionally:
  MRI data, Outpatient letters

  Data is collected from NHS centers that meet a minimum criteria and desire to be part of the research programme. Once all the relevant data sharing agreements and approvals are in place, synchronisation software is installed and the dataset is securely transmitted to the Register. The dataset is extracted using a variety of methods depending on the clinical site. Sites using a clinical system can extract from that, those that don't, have a CRF that they can complete and transmit monthly.

  Transmitted data is then split, demographics are stored in one entirely separate database to the incoming clinical information. Free text is not taken from CRF or Database upload. From the demographics and derived set of anonymised data is created that can be linked back to the clinical set.

• Research programme

  The primary research programme that the Register supports are the research topics surrounding the epidemiology of MS in the UK. A number of studies into Anxiety and Depression in MS, Outcome measures used in the diagnosis and management of MS, Diet and vitamin D effects on elements of the Register population - Correlation of aspects of MS (e.g. types, occurrence or relapses) with various demographic factors.· Determination of the burden of disease and health economic impact. Fundamentally this supports a number of key communities: PwMS Clinical Staff Clinical Academics MS Researchers Feedback of responses to PwMS, directly via the Register, via research papers, newsletters and meetings. Clinical staff are involved with the capture of clinical data, and (with permission) PRoMS data about participants. Clinical Academics are involved in discussions around the not appropriate data to be collected and recommendations in research directions. Aggregate papers making use of any anonymised data from clinical sites will reference all local PI’s. MS Researchers bring their own research priorities to the Register - These are serviced through deployment of a questionnaire or governed access to existing data.

• Research database title

  The UK MS Register

• Establishment organisation

  Swansea University Medical School

• Establishment organisation address

  Data Science Building

  Singleton Park

  Swansea

  SA2 8PP