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 will collect and report anonymised patient data right across twenty three countries (additional countries preparing to join the registry), improving patient monitoring and care. Additionally the platform will allow each patients encounter at their CF centre to be monitored and tracked, with helpful patient charts to interact and discuss progress 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.

For more information to develop a customization for your registry organisation or chronic disease, contact fiona.aherne@openapp.ie

This article was published by Fiona Aherne

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Just over a week to go until the Irish Healthcare Awards @HealthAwardsIrl OpenApps' projects in collaboration with the HSE are in the running for "Best Use of Information Technology" & "Public Health Initiative of the Year" 🤞https://www.openapp.ie/openapp-projects-in-collaboration-with-the-hse-shortlisted-for-irish-health-awards-2022/ #IMTIHA22

Very interesting comments by the FDA RWE panel today at #NORDSummit regarding the pros and cons of using #registry data vs. other sources of data for RWE studies. Registry data can be much higher in quality and accuracy but, at times, less efficient.

Thank you to all of our speakers, attendees, and staff for a great first day of the #NORDSummit! We look forward to learning, networking, and discussing important #RareDisease topics together again tomorrow.

"Partnerships with patients and patient advocacy groups increase #DrugDevelopment success."

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