European cystic fibrosis society share their registry experience

The European Cystic Fibrosis Society Patient Registry (ECFSPR) is one of OpenApp's more mature registries having first been developed in 2012. It has grown exponentially through the continued work of both the European Cystic Fibrosis Society (ECFS) and OpenApp and currently accommodates 56,000 patients across 39 countries in 2022.

We are looking back at a 2019 presentation given by ECFS titled, "ECFS Patient Registry". Presented by Jacqui Van Rens (Executive Registry Coordinator), this talk is an excellent resource for those new to the patient registry space to gain a footing in what a registry is and the potential they hold for rare disease patient organisations today.



In the presentation Jacqui outlines many of the motivating factors for ECFS setting up a registry, which in OpenApp's experience, mirror those of many patient organisations today:

  • The ability to collect data to describe the natural history of the condition.
  • Collate information on the effectiveness and safety of treatments employed.
  • A tool to empower stakeholders to drive the improvement of care.

The needs of ECFS are dynamic and constantly evolving so it is paramount that they have a system with the flexibility to address them: whether that be allowing for expansion through new countries/centres, providing clinicians multiple avenues for data capture (whether it be once a year or at each patient visit), or supporting pharmacovigilance needs for new medications.

For those organisations who want their registry to encompass many different countries/centres, ECFS is an appropriate example of how international registries can work. Countries can even benchmark performance of their respective centres against others to see if improvements in care are required, this type of breakdown informs the annual public facing reports that ECFS share with it’s community.


Through the platform ECFS has been able to engage industry with anonymized real world data informing phase 2 and phase 3 clinical trials, and in 2020 enrolled 603 CF patients to clinical trials.

Head to the CF Trust website to watch the presentation by Jacqui Van Rens about the ECFS Patient Registry. To learn more about the ECFS Patient Registry, please head to the ECFS website.

To discuss with OpenApp how we can help you on your registry journey, please contact us.

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