Clinical Trials Logo
  1. Home
  2. Cystinosis
  3. NCT00004312

Establishment of a Database for Long-Term Monitoring of Patients With Nephropathic Cystinosis

Cystinosis Clinical Trial

Clinical Trial Summary

OBJECTIVES: I. Establish a computerized databank to monitor the progress of patients with cystinosis treated with cysteamine.

II. Track and monitor all patients including renal transplant, dialysis and post renal transplants.

Clinical Trial Description

PROTOCOL OUTLINE:

Data are collected from patients and physicians. Information includes disease, treatment, family history, demographic, and physical exam data. The dates of kidney transplantation and/or dialysis initiation are also recorded. ;

Study Design

Primary Purpose: Screening

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT00004312
Study type Observational
Source National Center for Research Resources (NCRR)
Contact
Status Completed
Phase N/A
Start date October 1999
View Details
See also
  Status Clinical Trial Phase
Recruiting NCT05545774 - Neuromuscular Characterisation in Late Adolescent and Adult Cystinosis Patients
Completed NCT01432561 - Study in Healthy Adults to Determine the Effect That Food Has on the Absorption and Delivery of the Drug Cystagon™ N/A
Recruiting NCT05687474 - Baby Detect : Genomic Newborn Screening
Completed NCT04125927 - Cystadrops in Pediatric Cystinosis Patients From Six Months to Less Than Two Years Old (SCOB2) Phase 3
Completed NCT00071903 - The Role of Susceptibility to Thrombosis in the Pseudotumor Cerebri of Nephropathic Cystinosis: A Case-Control Study N/A
Recruiting NCT05994534 - PK and PD Study of NPI-001 and Cysteamine Bitartrate Phase 1/Phase 2
Completed NCT00004350 - Evaluation of Fanconi Syndrome and Cystinosis N/A
Enrolling by invitation NCT03655223 - Early Check: Expanded Screening in Newborns
Recruiting NCT06065852 - National Registry of Rare Kidney Diseases
Completed NCT02533076 - The Functional Consequences of the CTNS-deletion for the TRPV1-receptor in Cystinosis Patients Phase 0
Enrolling by invitation NCT05146830 - A Long-Term Follow-Up Study of Participants With Cystinosis Who Previously Received CTNS-RD-04
Completed NCT00872729 - Pilot Study of Safety, Tolerability, Pharmacokinetics/Pharmacodynamics of RP103 Compared to Cystagon® in Patients With Cystinosis Phase 1/Phase 2
Completed NCT00001736 - New Cysteamine Eye Drops Formulation to Treat Corneal Crystals in Cystinosis Phase 1
Recruiting NCT05959668 - Development of Health-related Quality of Life Instrument for Patients With Cystinosis
Withdrawn NCT02124070 - Therapeutic Effect of Recombinant Human Growth Hormone (rhGH) on the Myopathy of Cystinosis Phase 1/Phase 2
Completed NCT01614431 - N Acetyl Cysteine for Cystinosis Patients Phase 4
Recruiting NCT05843851 - Genetic Newborn Screening for Cystinosis and Primary Hyperoxaluria N/A
Completed NCT01000961 - Phase 3 Study of Cysteamine Bitartrate Delayed-release (RP103) Compared to Cystagon® in Patients With Cystinosis Phase 3
Active, not recruiting NCT03897361 - Stem Cell Gene Therapy for Cystinosis Phase 1/Phase 2
Recruiting NCT01793168 - Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford