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Using the Cure Cystinosis International Registry to Recruit for Clinical Trials

A key goal of the Cure Cystinosis International Registry is to assist clinicians, pharmaceutical companies and researchers in developing new clinical trials and studies for cystinosis. By ascertaining subsets of participants, study investigators/sponsors can identify target populations with the characteristics needed for recruitment of specific studies.

Interested study investigators/sponsors registered with CCIR should begin by performing their desired search, using the Explore Responses  function.

Study investigators/sponsors also have the capability to execute searches on certain profile elements using the Filter Responses Function.
For searches that include participant location and profile curation status, or for more refined or complex searches, contact the CCIR Curator who can assist you with your data query and create custom registry reports. Results from each search are displayed with all personally identifying information removed.
In addition to posting IRB approved clinical trial recruitment material on the CCIR homepage, study investigators/sponsors have the option of requesting targeted email distribution of the recruitment material. 

CCIR is deeply committed to issues of privacy and identity, and will continue to take every available measure to ensure the security of registrant personal information.

Interested participants and providers will be instructed to contact the study recruiter directly. Email and website notices will include language that CCIR does not endorse specific studies, but provides this information as a service to the community.

Curation of profile responses

Only fully completed patient profiles are included in CCIR database searches. CCIR curates the clinical information submitted by the participant. Curation is an ongoing and continuous process, however; the information searchable in the CCIR registry represents all curated and uncurated data provided by CCIR registrants. Specific details of curation can be discussed with CCIR, and may be used to refine searches.

Study investigator/sponsor responsibilities

The study investigators/sponsors responsible for the research study/clinical trial will determine the prospective participants’ eligibility, and are responsible for addressing all questions asked by potential participants.

Download Clinical Trial/Research Study Form