Sheffield MND Research Database (renewal)

  • Research type

    Research Database

  • IRAS ID

    362564

  • Contact name

    Pamela Shaw

  • Contact email

    pamela.shaw@sheffield.ac.uk

  • Research summary

    Sheffield MND Research Database: Access to patients' health records for research purposes

  • REC name

    Yorkshire & The Humber - Sheffield Research Ethics Committee

  • REC reference

    26/YH/0024

  • Date of REC Opinion

    6 Mar 2026

  • REC opinion

    Favourable Opinion

  • Data collection arrangements

    Clinical information is gathered and entered onto health records systems during normal clinical care pathways by the clinical care team. The MND clinical database contains information from clinical records, outpatient clinic visits and clinical studies of MND patients. Details of patients’ disease progression and clinical care are documented on the database and following death will remain on the system for use in research. Data is also stored across other health records systems held across the Trust, for example neurophysiology, imaging, physiotherapy and other allied health teams. Data across all systems is linked via patients’ unique hospital number.

  • Research programme

    The Research Database will support MND researchers in Sheffield and their collaborators. Any outcomes of the research will provide information to improve the care and treatment of MND patients.

  • Research database title

    Sheffield MND Research Database: Access to patients' health records for research purposes

  • Establishment organisation

    Sheffield Teaching Hospitals NHS Foundation Trust

  • Establishment organisation address

    Clinical Research & Innovation Office Sheffield, D Floor

    Royal Hallamshire Hospital

    Glossop Road, Sheffield

    S10 2JF