The Northstar Clinical Network is coordinated by UCL and Great Ormond Street Hospital. The network brings together clinicians, hospitals, academics, biotechs, healthcare authorities and charities with interests in the care of patients with Duchenne Muscular Dystrophy (DMD).

Key Challenges:

  • Collect longitudinal patient data in clinical settings over an extended period
  • Support the analysis of data for research
  • Drive the adoption of a unified database across the UK
  • Provide support and work in close partnership with the network
  • Deliver, in partnership, data as required by NICE
  • Evolve the software services as the network’s focus changes
  • Satisfy information governance requirements across multiple centres

The Solution:

  • The development of clinical forms for use in data collection in clinics throughout the UK
  • A Clarinet Technology database system for DMD patient records
  • Secure online data entry services 
  • Automated paper form scanning services
  • Data analytic services
  • A robust approach to information security management

The Result:

  • A valuable shared database asset establishing the network within the clinical community
  • A national system providing a vehicle to drive best practice
  • A 15 year longitudinal dataset of DMD patient data
  • Support for research leading to substantial publication and changes to clinical practice
  • Recognised by NICE for monitoring patients on new DMD treatments