Other Names for this Disease
- Cystine diathesis
- Cystine disease
- Cystine storage disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.
- ClinicalTrials.gov lists trials that are studying or have studied Cystinosis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The Cystinosis Research Foundation Web site provides information on cystinosis research. Click on the link above to learn more.
- Cystinosis Research Network provides information on how to participate in cystinosis research.
- The Cure Cystinosis International Registry (CCIR) provides access to clinical treatment trials currently seeking participants. CCIR also offers information for study investigators, sponsors, and research professionals who wish to partner with CCIR to identify potential candidates for research studies.
- The Lysosomal Disease Network is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with this condition through research. The Lysosomal Disease Network has a registry for patients who wish to be contacted about clinical research opportunities.