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.

Latest News

The Right People in the Right Place

21 June 2022

Geospatial Needs Analysis = Right Service In The Right Place Historically, new mental health staff were hired on a national basis and assigned to their nearby Community Healthcare Organization (or CHOs). While additional resources were welcome, this approach ignored community need in regards to the right services provided by the…

Read More

OpenApp Celebrates 20th Anniversary

23 May 2022

OpenApp Celebrates 20th Anniversary OpenApp is delighted to announce: we’ve turned 20! From starting with a focus on open source software in Ireland and the EU, to the global expansion into patient registries to support patient advocacy, disease research, and treatment efficacy research, we’ve greatly expanded our impact on healthcare…

Read More

Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality

25 March 2022

Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality OpenApp are pleased to announce the NF Registry by Children’s Tumour Foundation (CTF)  is now live in four additional languages: French, Italian, Portuguese and Spanish. This new enhancement provides access to the registry…

Read More


Avoca House,

189-193 Parnell Street,


D01 H578





Irish Number:

+353 (1) 872 9331

US Number:

+1 (914) 455-0216

Combining public and bespoke datasets with accessible geospatial data visualisation reveals hidden patterns.

OpenApp are delighted to announce that we will be attending the 11th ECRD conference, the largest patient-led rare disease conference. We hope to see you there!#ecrd2022

Considering a registry? But struggling with where to start and what to consider? Here's an article penned by OpenApp's CEO and Head of Business Development that sheds light on the common misconceptions about starting a registry:

Load More...

Copyright © 2021 OpenApplications All rights reserved.

OpenApplications Consulting Ltd. Registered in Ireland No. 355595