The Cure Cystinosis International Registry (www.cystinosisregistry.org) will provide an opportunity for those with Cystinosis to be involved in research that will help develop and test new therapies and develop a cure for Cystinosis. The registry resource will connect the stakeholders in the Cystinosis community – the scientists, researchers, clinicians, pharmaceutical companies, patients and families – and provide them with resources that have never been available in one place before. The Cure Cystinosis International Registry is dedicated to improving the lives of those affected by Cystinosis and to finding a cure for Cystinosis.
The Cystinosis Foundation UK is a supporter of the registry and we encourage all those with Cystinosis in the UK to register to help improve the quality of information in the database, which will aid researchers and professionals in their work.
The information provided on the Cure Cystinosis International Registry has been developed with direction and advice from the Cure Cystinosis International Registry Medical and Scientific Council, a group of experts in Cystinosis, and the Cure Cystinosis International Registry Advisory Board.
All the information in the registry can only be accessed by approved professionals who cannot see which individuals have provided their data.