OpenApp attend ECFS 2014, Gothenburg
37th Annual European Cystic Fibrosis Society
OpenApp have been developing the new European Cystic Fibrosis Society patient registry software, ECFSTracker in partnership with the ECFS Patient Registry steering group since March 2013. Since giving a preliminary demonstration and approach to the future design in Lisbon 2013, the project has progressed to training and launch across Europe in early 2014.
Throughout the three days, Mel and Fiona met with many users of ECFSTracker, and also new users who have decided to adopt the software for their local centre and national data collection and reporting tool. Some countries have also expressed a desire to extend the software within their own countries to collect local variables they wish to collect.
It was a pleasure to attend the conference, meeting with many pioneering researchers and medical professionals leading the way in Cystic Fibrosis.
Real-World Data Collection Enables Evaluating the Safety and Effectiveness of Treatments for Spinal Muscular Atrophy
This exciting initiative combines collecting real-world patient data by neurologists, clinicians and patients to enable clinical research and engagement of spinal muscular atrophy patients receiving treatment.
SMArtCARE is a multi-year joint initiative of neurologists, paediatricians, and patients with spinal muscular atrophy (SMA). Spinal muscular atrophy refers to a group of rare genetic diseases resulting in muscle wastage and weakness. Symptom onset can be seen in both children and adults but the most severe form typically presents in children under 18 months old. Until recent treatments survival past childhood was unusual.Read More
The NF registry is a one of a kind project, where the OpenApp team worked in collaboration with CTF to develop and support a platform that meets their requirements, as a secure and effective tool to empower NF patients and their caregivers. A dedicated registry is the most efficient way to raise awareness/advocate for NF, expand the NF community, and connect to help end NF.Read More
Combining the development efforts and the ongoing maintenance of your software is key to ensuring that you have a robust and constantly improving and evolving solution.
Having a software maintenance plan is just as important as the initial development. Professionally managed maintenance allows for the continual improvement and adaptation to changing business needs and technological advancements.Read More