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Reproducible analytical pipeline (RAP) for mortality analyses of rare diseases using data from EUROSTAT

Background

Rare diseases are often too uncommon to study effectively using individual datasets. European mortality data from EUROSTAT provide an opportunity to understand disease burden and changing patterns of mortality across countries and over time.

The RECORDER team has developed a reproducible analytical pipeline (RAP) that provides a consistent approach to extracting, analysing and reporting European mortality data. Once established, the same framework can be applied to different rare diseases, making analyses more efficient, comparable and reproducible.

The RAP is also a training resource for clinical academics, providing trainees with the opportunity to develop practical data-science skills while answering clinically relevant research questions. It has already supported studies of GPA/MPA and HLH, with further analyses of sarcoidosis, EGPA and alpha-1 antitrypsin deficiency under review. Planned projects include SLE, idiopathic inflammatory myopathy, systemic sclerosis and Guillain-Barré syndrome.

Together, these projects are building a growing, comparable picture of rare disease mortality across Europe while developing the next generation of clinical academic data scientists.

Aims

  1. To develop a reusable and reproducible approach to analysing European mortality data.
  2. To generate comparable evidence about mortality across rare diseases.
  3. To support clinical academic trainees to develop health data-science skills.
  4. To create a scalable resource that can be applied to additional rare diseases and updated as new data become available.

Publications

Gumber L, Omidvar R, Gonnelli F et al. Temporal trends in mortality due to haemophagocytic lymphohistiocytosis (HLH) across 29 European countries over a 10-year period, Lancet Rheumatology

Biddle K, Taylor A, Trimble TJ, Grainge MJ, Lanyon P, Galloway J, Pearce FA. Trends in mortality due to GPA/MPA across Europe: insights from a decade of death registrations. Rheumatology (Oxford). doi:

 

Start date: July 2023
Contact: Adam Taylor
Funder: MRC