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Cure Cystinosis International Registry

NCT01327807 · Status: UNKNOWN · Type: OBSERVATIONAL · Enrollment: 750

Last updated 2014-03-12

No results posted yet for this study

Summary

Cure Cystinosis International Registry (CCIR) is an online, patient self-identifying registry developed by medical and scientific experts specifically for the cystinosis community.

CCIR's sole purpose is to identify people with cystinosis worldwide in an effort to accelerate novel treatments and a cure for cystinosis.

CCIR provides a safe and secure platform for:

* sharing anonymous medical information about cystinosis with researchers, clinicians and patients
* disseminating information about research opportunities
* connecting researchers/investigators and prospective participants \*

Interested cystinosis patients may register themselves with CCIR online at http://www.cystinosisregistry.org.

\* No personal information is shared outside of CCIR. Individual identities are known only to appropriate CCIR staff. If a participant is matched to a clinical trial, the participant receives a notice from CCIR, after which they can decide whether they wish to contact the study sponsor.

Conditions

  • Cystinosis
  • Nephropathic Cystinosis
  • Renal Fanconi Syndrome

Sponsors & Collaborators

  • Cystinosis Research Foundation

    lead OTHER

Principal Investigators

  • Jerry A Schneider, M.D. · University of California, San Diego

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2010-08-31
Primary Completion
2020-12-31
Completion
2022-12-31

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT01327807 on ClinicalTrials.gov