An observational study in Primary Hyperoxaluria, Dent Disease and Cystinuria, sponsored by Mayo Clinic. Recruiting at 4 sites in 2 countries. Open to participants aged 0 Years to 100 Years. Per ClinicalTrials.gov, last updated 2026-07-10.
Sponsored by Mayo Clinic · Observational
The purpose of this study is to collect medical information from a large number of patients in many areas of the world with primary hyperoxaluria (PH), Dent disease, Cystinuria and APRT deficiency. This information will create a registry that will help us to compare similarities and differences in patients and their symptoms. The more patients we are able to enter into the registry, the more we will be able to understand the Primary Hyperoxalurias,Dent disease, cystinuria and APRT and learn better ways of caring for patients with these diseases.
This study involves the collection of medical information to create a computer database or registry for patients with PH, Dent disease, cystinuria and APRT deficiency. The information will be entered into the registry by your physician or health care provider. The computer web site for the registry is secure and protected by a required password. Some information which will be entered may include your age at first symptoms of PH,Dent disease, cystinuria or APRT, laboratory values, kidney function and the progress of your health over time. Information for an individual patient can only be viewed by the appropriate physician or staff. Once the information is entered into the registry, you will only be identified by a code number.
42 studies on the registry are indexed under Hyperoxaluria, Primary; 11 are open to participants now.
This study's planned enrollment of 730 is close to the median of 730 across 13 observational studies indexed under Hyperoxaluria, Primary.
Browse Hyperoxaluria, Primary studies →Mayo Clinic is the lead sponsor of 3,269 studies on the registry; 672 are open to participants now.
Of its 452 completed or terminated interventional studies of FDA-regulated products, 321 (71%) have results posted.
Counted across the registry records on this site, refreshed daily.
Individuals with Primary Hyperoxaluria, Dent Disease, Cystinuria and APRT Deficiency.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Registry will include data on patients with confirmed diagnosis of Primary Hyperoxaluria.
Registry will include data on patients with confirmed diagnosis of Dent Disease.
Registry will include data on patients with confirmed diagnosis of Cystinuria.
Registry will include data on patients with confirmed diagnosis of APRT deficiency.
Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledge
The patient Registries will expand knowledge of the clinical expression of these disease by systematically accumulating and analyzing information regarding a larger number of patients than have been studied to date.
Time frame: Yearly
Improved understanding of symptoms and progression of four major diseases of hereditary nephrolithiasis.
The goal of the patient Registries is to collect data about these rare diseases, provide a better understanding of these four conditions and help to develop new treatments.
Time frame: Yearly
Plan to share: Yes — Using limited data set, data will be shared through the Data Monitoring and Coordinating Center of the Rare Diseases Clinical Research Network.
No publications or documents are linked to this record.
The record gives a start of Jul 2003, a primary completion of Jun 2028 and a completion of Jun 2028. It does not say whether these dates are actual or estimated.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.