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CCIR Assisted Registration Program

Stipends available to medical professionals who provide registration assistance to patients.  Learn about CCIR's Assisted Registration Program.

The Cure Cystinosis International Registry understands that there are cystinosis patients who may wish to participate in the registry, but encounter barriers to registration. These barriers include not  speaking any of the languages in which the registry is available, not having access to a computer, not having adequate computer skills, or needing help interpreting the medical questionnaire due to low literacy or education levels. Medical professionals who interact with these patients and support the registry’s mission may be instrumental in overcoming these barriers and facilitating patient registration. CCIR is therefore pleased to announce that a stipend is now available to compensate physicians and/or medical staff who dedicate time to assisting cystinosis patients with CCIR registration.

The stipend is set as $50 U.S. dollars per assisted registration of eligible cystinosis patients who express a desire to participate, but experience one or more barriers to registration. The stipend is intended to cover the time and effort the medical professional spends in assisting patients with CCIR registration, and is by no means intended as an incentive for recruiting patients. 

In order to be eligible to conduct assisted registrations, professionals must meet the following criteria:

•      -  be proficient in English;
       -  interact fluently with patients in their native language; and
       -  be registered with the registry as a professional through the CCIR Professional Portal.   


To learn more and to apply, download the following documents:

CCIR Assisted Registration Program Information
CCIR Assisted Registration Stipend Application