ECFSTracker goes live!

ECFS

OpenApp’s Cystic Fibrosis customization of our Clinical Insight Platform was officially launched at the European Cystic Fibrosis Society’s Winter Meeting. Held in the pretty city of Leuven, Belgium on Thursday, January 25th. The meeting brought together members from over twenty European Nations.

Kevin Gill (lead developer) and Fiona Aherne (project manager) of the CF Clinical Insight platform travelled to Belgium for the launch and training of European National Registries co-ordinators and CF centre co-ordinators. Only two sessions were required to train across national registry and centre training, incorporating members across twenty three nations.

ECFSTracker, the European Cystic Fibrosis Society tracker, collects and reports anonymised patient data across twenty three countries (with additional countries preparing to join the registry), improving patient monitoring and care. Additionally the platform allows each patient encounter at their Cystic Fibrosis centre to be monitored and tracked, with helpful patient charts to enable discussions between doctor and patient.

During the winter meeting, Dr Ed McKone (St Vincents University Hospital, Ireland) officially took over from Dr Hanne Olesen (Aarhus University Hospital, Denmark) as Executive Director of the ECFS Patient Registry. OpenApp would like to extend their best wishes and thanks to both, along with the extended project team for their continued clinical leadership of the project.


Learn more about OpenApp's work with Cystic Fibrosis

or contact us to learn more about patient registries

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Today is #rarediseaseday2023 a very important date for both Rare Disease Awareness and Advocacy! There are over 6000 known rare diseases today, affecting 300 million people around the world.

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