Recruiting

Cystinosis Registry

Sponsor:

Cystinosis Research Foundation

Code:

NCT01327807

Conditions

Cystinosis

Nephropathic Cystinosis

Renal Fanconi Syndrome

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief 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

Study ID

NCT01327807

Start date

Aug, 2010

Status verified date

Mar, 2014

Completion date

Dec, 2022

Anticipated

Primary completion date

Dec, 2020

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Inclusion Criteria:

  • Diagnosis of cystinosis

Study Design

Enrollment

750 participants

Anticipated

Interventions and Outcome Measures

Arms

Cystinsosis patients

Those with a diagnosis of cystinosis.

Primary outcome measure

  • Age at treatment initiation and the effect on disease outcomes [ Time Frame: Lifetime ]

Central Contacts and Locations

Central contacts

Betty L Cabrera, M.P.H

858-822-3747curator@cystinosisregistry.org

Locations

University of California, San Diego

Recruiting

San Diego, California, United States, 92103-8450

Contacts

Betty L Cabrera, M.P.H.

619-471-9554curator@cystinosisregistry.org

Principal Investigator:

Jerry A Schneider, M.D.

More Information

Sponsor

Cystinosis Research Foundation

Last update posted

Mar 12, 2014

Last verified

Mar, 2014

Keywords

  • Registries
  • Cystinosis
  • Nephropathic Cystinosis
  • Renal Fanconi Syndrome
  • Cystine
  • Kidney
  • Rare Diseases

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by Cystinosis Research Foundation on 2014-03-12.