OpenApp, a leading provider of healthcare IT solutions, has developed a new patient registry to support the fight against Tay-Sachs and Sandhoff disease. This new registry is a joint initiative between The Cure & Action for Tay-Sachs (CATS) Foundation in the UK and “Acción y Cura para Tay-Sachs (ACTAYS)” in Spain, two organisations who support families affected by these rare diseases.
OpenApp get Developer Approved Status for the Oxford Hip & Knee Score
OpenApp is delighted to report that it has received Developer Approved Status for the online versions of the Oxford Hip and Knee Score. This is essential for use in arthroplasty registries.
This was awarded to OpenApp by Isis Outcomes, a department of Isis Innovation. Isis Outcomes are specialists in Patient Reported Outcome Measures (PROMS) and are a leader in technology transfer, having recently won the ‘Technology Transfer Unit of the Year’ beating off stiff competition by Cambridge and Stanford at the Global University Venturing Awards.
2014 – A Good Year for Rare Disease Registries
What a year 2014 has been in the area of rare disease and rare disease registries. It was an active year for rare disease registries. The number of rare disease patient registries continued to grow – from just 500 in 2011 to over 620 in 2014. Here are some of the highlights that I see from 2014:
European Cystic Fibrosis Society PR publish Orphanet Journal Article
“Valuable lessons learned on how to sustain a disease registry” gives an interesting insight to lessons learned from an experienced disease registry who have grown from data collection and management through spreadsheets on a voluntary basis to a professional patient registry with full time staff and bespoke software built for purpose collecting data from over twenty countries (additional countries continuously joining).
ECFSTracker goes live!
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.
