OpenApp awarded European Cystic Fibrosis Patient Registry



In March 2013, OpenApp welcomed six members of the European Cystic Fibrosis Patient Registry to our Dublin office to sign and commence the development project for their new ECFSTracker application.  The European Cystic Fibrosis Societyy is an international community of scientific and clinical professionals committed to improving survival and quality of life for people with Cystic Fibrosis (CF) by promoting high quality research, education and care.

OpenApp beat off competition by way of tender and a presentation session with the design of a customised OpenApp eHealth product. ECFSTracker is a customisation of the Boston Children’s Hospital Indivo PHR project with additional Django features.

Developing with the ECFS Project Team

Many OpenApp projects are co-development with the clients. In this case after a successful project kick-off meeting, OpenApp began several development sprints, releasing the foundation blocks to the ECFS project team test system. This included patient annual summary's, two types of data collection, a) centre data collection format and b). external data take on (import) along with standard reporting across both types of data.

With development at this early but key stage, OpenApp were invited to present at the Annual ECFS conference in Lisbon (June 2013). While in Lisbon, OpenApp made two presentations; the first to the ECFS patient registry working group, and the second to a larger group of all participating countries within the registry. The initial development received many positive comments with users eager to use the final system.

Currently the project is closing out development and implementing UAT (user acceptance testing) changes. The full development project is proposed to be rolled out to three Beta countries, each with three different use cases in the coming months.

When 'Live', the system will encompass a new user friendly Cystic Fibrosis Patient Registry for:

  • 20 countries, some with multiple centre's in their country.

  • The possibility to add additional countries as more wish to participate in data collection

System-wide Features

  1. The system caters for different use cases depending on the availability of in-country existing Cystic Fibrosis systems.

  2. Browser-based with a simple user interface minimising training needs.

  3. The system is remotely managed and updated which reduces reliance on the local hospital IT.

Data Collection & Reporting Features

  1. Patient-encounter recording – clinical readings.

  2. Share records between centres within a country to allow dual-centre attendance.

  3. Ability to generate annual summary across all patients at the push of a button using encounter data.

  4. Ability to upload data from external systems, allowing data take on and reporting in a uniform fashion.

  5. Various reporting levels and graphs – by patient, by clinical centre, by country, up to pan-European level.

Learn more about OpenApp's Patient Registry platform or Enquire about a patient registry

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