Other Names for this Disease
- Cystine diathesis
- Cystine disease
- Cystine storage disease
- Protein defect of cystin transport
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.
On this page
- 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.
For more information on the registry see: http://rarediseasesnetwork.epi.usf.edu/registry/index.htm
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.