Longditudinal Study for Muscular Dystrophy

Data collection and analysis for the North Star Clinical Network

The Muscular Dystrophy Campaign is the leading UK charity focusing on all muscle disease. In 2003 it set up the North Star project to help drive improvements in services and set national standards of care for children living with Duchenne muscular dystrophy (DMD).

A key goal of the project was to gather information on disease activity in a large group of patients with DMD, in order to inform best practice on interventions. The network now includes 21 consultants, 17 physiotherapists and allied health professionals from many specialist paediatric neuromuscular centres.

Customer Challenge

  • To develop a system suitable for long-term monitoring of ambulant patients with Duchenne muscular dystrophy, and for busy professionals responsible for patient data.
  • To facilitate longitudinal studies of intervention, allowing correlation analysis between medical and physiotherapy assessments.

Our Approach

  • We advised on setting up a project board including key consultants and physiotherapists and chaired by an MDC manager. Under its guidance, forms were designed, requirements refined and the system deployed.
  • We deployed Axiom Sureyor,developed medical and physiotherapy forms suitable for use in specialist centres, and ran an intensive workshop with consultants and physiotherapists in order to refine the system ready for rollout to the specialist centres.
  • As experience was gained, we have continued to assist with refining and extending the forms.

Customer Benefits

  • A fully web-based system offering secure access by specialists from their centres.
  • Extensively validated forms, suitable for use both clinically and for input to the longitudinal study.
  • Off-line or on-line data entry, with an option for scannable printed forms.
  • Changes to forms can be accommodated with case data presented by default in the latest version of the form.
  • Reports can be configured for printing, spreadsheet analysis or for input to other systems.
  • Full version control history of submitted forms, which can be safely updated as additional information becomes available.
  • Straightforward rollout for related networks, including SMArtNet.
  • Anonymisation of patient data.
  • Full access control based on specialist centre and user role.
  • Successful rollout, on time and on budget.