Osteogenesis Imperfecta is a rare and complex disease. To enable research good data is paramount. At the moment patient data is managed locally and in small quantities. Based on the frequency of OI (which exists everywhere in the world) there is an estimate of 500.000 people with OI. The largest existing data base comprises 3000 patients.
Our aim of Project Key4OI is to establish a global evergreen data base for OI. A coalition of World leading medical specialists and Patients organisations has agreed to work together on this coordinated by Care4BrittleBones. The result will be a fit for purpose data base for patient reported and clinically reported data to enable research and clinical trials to improve care, therapies and find - eventually - the cure.
The total cost of the project is 522.000 Euros.
Duration 2 years (set up/pilot) plus 3 years (implementation).
Start of this project: June 2018.
Detailed information can be provided on request. Contact: firstname.lastname@example.org
We are encouraging anyone with contacts who may help us to enable the project to be in touch. We can use any help that we can generate through our networks. This is the most ambitious project we have at the moment. Thank you for your support!