Last week the Client Engagement team and MD Con Hennessy attended World Orphan Drug Congress in Barcelona, Spain.
Now in its 10th year, WODC has become one of the largest and well-established events on rare diseases and orphan drugs within Europe, catering for patient advocacy groups, regulators, and industry from across the continent.
Con Hennessy, our MD was invited to give a talk about “Ingredients for a Successful International Registry” on Day two of the Congress.
The first day of the conference passed by in a blur of activity. As this was our first year exhibiting, it enabled us to have lots of conversations with new friends and virtual friends which we know from Twitter.
So many people stopped by our stand, attracted by our new colours and messaging. It was great to be able to share with individuals and organisations our work on patient registries, clinical registries and pharma-sponsored registries. We gave demonstrations of our software so people could really see for themselves how robust our platform truly is.
(If you missed a demonstration and would like to see it for yourself, please get in touch with us).
Day two began like day one - busy with conversations. Only on Day 2, Con took to the stage where he outlined three key areas to get started when ‘Creating a Successful International Registry’.
He began with “Registries are patient stories translated into useful data” and spoke about having a vision of your registry, getting stakeholders involved right through to developing and sustaining a registry.
Over all, we had a super time at the Congress. We met old friends and made new ones.
If we didn’t get a chance to meet, please do not hesitate in contacting us. We’d love to hear from you.
Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality
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
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…Read More
Multi agency toolkit, incident management and location coordination What is AeroMedical? The Aero-Medical module is a custom software application developed by OpenApp which is used by the Health Service Executive (HSE) Aero-Medical Services, the Air Corps and the Irish Coast Guard . It consists of user-interface/screens showing real-time availability of…Read More