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.
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).
Meet OpenApp at the following upcoming events
The Rare Disease Puzzle: Bringing the Picture to Life
OpenApp are pleased to be attending the 2014 European Rare Disease Conference, Berlin 8th-10th May.
