Project Name: UK Chronic Myeloid Leukaemia Registry – Band 6 Data Manager

Project Summary:

This Collaborative Working Project (CWP) between Imperial College Healthcare NHS Trust (CW Partner) and Novartis aims to support the reactivation and expansion of the UK Chronic Myeloid Leukaemia (CML) Registry. The UK CML Registry is a national registry initially established as a regional registry in 2010, then expanded nationally in 2015. More than 700 patients are enrolled from all over the UK.

The aim of this CWP is to relaunch and reactivate the only national registry in the UK following a temporary pause. Through supporting the re-establishment of this registry, this CWP will facilitate the CML community being able to describe the CML patient population in the UK and contribute towards the development of future evidence based patient management in order to optimise patient outcomes.

This will be achieved by funding and recruiting a Band 6 Data Manager for 24 months.

The CWP aims to enable the CW Partner to:

  • Support expansion of the CML Registry across the UK to enable real-time evaluation of how treatment pathways impact patient care.
  • Support service evaluation by comparing aggregated outcomes across participating hospitals, identifying variation in care, and informing shared learning and best practice.
  • Support service evaluation by describing current clinical practice in relation to relevant national and international guidelines.
  • Support future evidence generation by maintaining a robust registry dataset that may be used, subject to appropriate governance, to explore outcomes such as treatment resistance, survival trends, and treatment-free remission.

 

Expected Benefits:

Anticipated Benefits for Patients:

  • A stronger understanding of real-world CML care, which may support service evaluation and more consistent care for patients across participating sites.
  • Improved understanding of treatment patterns and outcomes, which will support informed clinical decision-making and future service development.
  • Better visibility of outcomes in underrepresented patient groups, which may support evaluation of variation in care and future efforts to reduce unwarranted differences in practice.

 

Anticipated Benefits for the Organisation(s):

  • Improved understanding of the characteristics and management of CML, across participating sites, including in underrepresented patient cohorts.
  • More efficient registry operations through streamlined data capture, entry, validation, and processing.
  • Enhanced data quality and integrity to support service evaluation, reporting, and appropriately governed analysis.
  • The outputs from the analysed data will serve as an educational tool for key decision makers and healthcare professionals to provide further tailored care and advice.

 

Anticipated Benefits for Novartis:

  • A broader understanding of the UK CML landscape as more centres and patients are able to be included into the Registry.
  • Ethical, professional, and transparent relationship between Novartis and the CW Partner.
  • Enhanced reputation supporting Novartis’ vision to provide high quality Collaborative Working with healthcare organisations, to help address some of the issues surrounding health inequalities.

Start Date & Expected Duration: July 2026, 30 months with 24 months of clinical activity.

FA-11729339 | July 2026