Patient Reported Outcomes
In the latest release of the Core Registry (June 2021), the platform has the ability to include tools that collect PROs and can provide language specificity. EQ5D-Y is now available in several languages. The new version of the registry also has more tools for personalising communication with patients.
New Modules In The Core Registry
The new version also has the capacity for clinicians to develop condition-specific outcome modules and if you are interested in developing a condition-specific outcome module please get in touch with Jiilian Bryce (Jillian.bryce@glasgow.ac.uk).
Completed Modules
A Thyroid module has been active for a few months and to find out more please contact Edward Visser at w.e.visser@erasmusmc.nl
A new module has just been developed for PHP/iPPSD and we would like to invite EuRRECa users to use this. To find out more please contact Alex Ertl at diana-alexandra.ertl@meduniwien.ac.at
Pituitary Working Group A new group of experts has initiated the development of a module for pituitary conditions. Aggressive pituitary adenoma and pituitary adenoma in childhood will be the first available datasets. To find out more, please contact A.L.Priego_Zurita@lumc.nl
Other Modules In Development
EuRR-Bone is planning to develop outcome modules on Rare Hypophosphataemia, Osteogenesis Imperfecta, Achondroplasia and FD/MAS. To find out more, please contact n.m.appelman-dijkstra@lumc.nl
Activity Report Further details of the activity of the Core Registry are available at eurreca.net/reports/
|