BLOG - Getting to the root of an alopecia areata EHDEN study-a-thon

Sustainable healthcare in Europe requires a better use of health data. For multiple stakeholders, including pharmaceutical organisations, real world evidence generation that is transparent, scalable and reproducible is vitally important. There is also an increasing need to understand patient wellbeing, disease, treatments, outcomes, new therapeutics and devices, in order to support patients, clinicians and to meet the requirements of payers, regulators and governments.

An EHDEN alopecia areata (AA) study-a-thon recently took place at the Erasmus Medical Centre in Rotterdam (20-21 November 2023). EHDEN Data Partners from Finland, Turkey, Estonia, Spain and the Netherlands came together to characterise a cohort of AA patients. This topic is of high interest to Pfizer, a partner in the EHDEN consortium that brings expertise, resources and support to create an interoperable real world data ecosystem for Europe.

AA is a complex autoimmune disease that causes hair loss on the scalp, face and sometimes on other areas of the body. Typically, the loss is patchy; however, it can be diffuse, or result in complete loss. With limited options for the effective management of AA, information on treatment practices and pathways is not readily available across Europe. The first outcome of the study-a-thon was the definition and characterisation of a cohort of AA patients.

This hands-on experience gave the study team invaluable insights and experience in conducting studies within the EHDEN network. For the Data Partners it was exciting to see how their data could provide valuable insights using the standardised tools developed by the Observational Health Data Sciences and Informatics (OHDSI) initiative and the EHDEN project. For the Pfizer team some key experiences included: navigating our existing internal processes and procedures to generate RWE using a federated data network; and highlighted opportunities for new ways of working, requiring alignment across several functions and organisational divisions. New or enhanced capabilities were also developed with the OMOP Common Data Model and standardised data analytics, deploying these on in-house datasets. The next steps will be to finalise the study data and share the findings with these AA and research partner communities. Last, but by no means least, this collaboration strengthened relationships with expert partners in the European RWE community and will serve to facilitate future collaborations.

This experience is contributing to a paradigm shift in the way RWE generation is conducted in Europe. The learnings go beyond this single use case and will help ensure a bright future for EHDEN as it continues preparing its transition to the EHDEN Foundation!