| NCT ID | NCT02026388 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Mayo Clinic |
| Condition | Primary Hyperoxaluria |
| Study Type | OBSERVATIONAL |
| Enrollment | 2,000 participants |
| Start Date | 2013-05 |
| Primary Completion | 2030-06 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 2,000 participants in total. It began in 2013-05 with a primary completion date of 2030-06.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
This study is being done to obtain samples from patients with primary hyperoxaluria, cystinuria, adenine phosphoribosyl transferase (APRT) deficiency, and Dent disease, and from their family members, for use in future research.
Eligibility Criteria
Inclusion Criteria: * Diagnosis of primary hyperoxaluria (PH) meeting one or more of the following criteria: 1. Liver biopsy documenting alanine-glyoxylate aminotransferase (AGT) activity below the normal reference range confirming PH type 1 OR Liver biopsy documenting glyoxylate reductase/hydroxypyruvate reductase (GR/HPR) activity below the normal reference range confirming PH type 2 2. Molecular genetic analysis (DNA testing) confirming mutations known to cause PH type 1, PH type 2, or PH type 3 3. Urinary oxalate excretion of greater than 0.8 mmol/1.73 m2/day (\>70 mg/1.73 m2/day) in the absence of a identifiable causes of secondary hyperoxaluria, including gastrointestinal disease known to cause enteric hyperoxaluria 4. A patient in end stage kidney failure, in whom neither a liver biopsy nor mutational analysis are available must have: (a) A plasma oxalate concentration of greater than 60 umol/L and a kidney biopsy confirming extensive oxalate deposits OR (b) Evidence of systemic oxalosis 5. Participants in the previous protocol "Tissue Bank of Urine, Blood, and Tissue Samples Collected from the Patients with Primary Hyperoxaluria" 'Mayo IRB #' #80-04. They have already consented to bank their samples and that consent will serve to enroll them in this study. * Diagnosis of Dent disease meeting one or more of the following criteria: 1. Identified mutation of the gene that encodes for chloride exchange transporter 5 (CLCN5) 2. Low molecular weight proteinuria and hypercalciuria 3. Low molecular weight proteinuria and nephrocalcinosis * Diagnosis of APRT disease meeting one or more of the following criteria: 1. Suspected dihydroxyadeninuria and absent APRT enzyme activity measured in red blood cells (RBCs). 2. Homozygosity, or compound heterozygosity, for known disease-causing APRT mutations. 3. Passage of dihydroxyadenine stones (confirmed with stone analysis). * Diagnosis of Cystinuria meeting one or more of the following criteria: 1. Stone analysis demonstrating that the stone contains cystine 2. Increased urinary cystine excretion (\>250 mg/gm creatinine) * Relative of someone with confirmed primary hyperoxaluria, Dent disease, APRT deficiency (also known as dihydroxyadeninuria), or cystinuria Exclusion Criteria: 1. Stone formers who do not meet the inclusion criteria for primary hyperoxaluria, cystinuria, Dent disease, or APRT deficiency. 2. Unwilling or unable to provide consent/assent.
Contact & Investigator
John C Lieske, M.D.
PRINCIPAL INVESTIGATOR
Mayo Clinic
Frequently Asked Questions
Who can join the NCT02026388 clinical trial?
This trial is open to participants of all sexes, studying Primary Hyperoxaluria. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT02026388 currently recruiting?
Yes, NCT02026388 is actively recruiting participants. Contact the research team at seide.barbara@mayo.edu for enrollment information.
Where is the NCT02026388 trial being conducted?
This trial is being conducted at Rochester, United States.
Who is sponsoring the NCT02026388 clinical trial?
NCT02026388 is sponsored by Mayo Clinic. The principal investigator is John C Lieske, M.D. at Mayo Clinic. The trial plans to enroll 2,000 participants.