Challenges for synthesising data in a network of registries for systemic psoriasis therapies.

BACKGROUND

Large disease registries are the preferred method to assess long-term treatment safety. If psoriasis registries collaborate in a network, their power to assess safety is increased.

OBJECTIVE

To identify heterogeneity in psoriasis registries and methodological challenges for synthesising the data they provide.

METHODS

We surveyed the registries in PSONET and identified and addressed the challenges to collaborative analysis for the network in several round table meetings.

RESULTS

Eight out of 10 registries had a prospective comparator cohort with similar disease characteristics but not on biologics. Registries differed in the coding and validation or follow-up of adverse events and in the way they sampled their population. Fifteen challenges to registries collaborating were identified in the areas of operational governance, structural conduct, bias and analysis.

CONCLUSIONS

Participation in PSONET, a network of psoriasis registries, helps identify and solve common issues, enhancing the individual registries, and provides larger sets of more powerful safety data in a diverse population. Challenges to interpreting data collectively include heterogeneity in sampling, variable penetration of biologics and compatibility of different datasets.