The purpose of the Cure Cystinosis International Registry (CCIR) is to assist in developing new clinical treatment trials and other research studies for cystinosis. We hope to achieve this goal by connecting the medical research communities and families affected by cystinosis to enable the flow of information between them.
The topic areas under the Clinical Trials Menu provide information about the goals and process of clinical treatment trials and answer frequently asked questions about participating in research opportunities. We encourage you to explore the main areas of the clinical trials section.
Explore Clinical Trials: provides access to clinical treatment trials currently seeking participants through CCIR, and ongoing clinical trials and research opportunities for individuals with cystinosis.
Using the Cure Cystinosis International Registry to Announce Clinical Trials and Research Opportunities: offers information for study investigators, sponsors, and research professionals who wish to partner with CCIR to identify potential candidate participants for clinical treatment trials and other research studies. Other CCIR members may also find this section helpful in understanding how the selection and recruitment process works.
All registered CCIR participants — cystinosis families and providers — are eligible to receive notification of research studies, including recruitment, updates and results outcomes.