The Cystinosis Research Foundation is excited to announce a new Cure Cystinosis International Registry (CCIR) launching soon. This improved patient-based international registry creates a central hub of information brought together by those living with cystinosis, their families and their caregivers connecting them within the medical research, clinical care and clinical trial communities. The information provided by patients and their families is shared with cystinosis clinicians, researchers and scientists who are pursuing better treatments and a cure for cystinosis.
For patients, CCIR will provide an opportunity for involvement 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 CCIR is dedicated to improving the lives of those affected by cystinosis and to finding a cure for cystinosis.
Stay tuned for details on the launch of the new CCIR platform and how you can participate.