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.