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Study was combined with Mayo protocol 07-003476
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| Name | Class |
|---|---|
| National Institutes of Health (NIH) | NIH |
| Oxalosis and Hyperoxaluria Foundation (OHF) | OTHER |
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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. This medical information will be entered into a registry to help the investigators compare similarities and differences in patients and their symptoms. The more patients that the investigators are able to enter into the registry, the more the investigators will be able to understand primary hyperoxaluria and learn better ways of treating patients with this disease. It is the investigators hope that by entering as many patients with PH as possible, the information that the investigators collect may help physicians diagnose patients sooner and determine what treatments may work best on patients with similar medical or genetic backgrounds.
This study involves the collection of medical information to create a computer database (registry) for patients with PH. The information will be entered into the registry by your physician, healthcare provider or a staff member of the Mayo Clinic Hyperoxaluria Center. 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,kidney stone history, lab values, kidney function, and your health over time. Information for a patient can only be viewed by the appropriate physician and staff. Once the information is entered into the registry, you will only be identified by a code number.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| PH Patients | Patients with: Primary Hyperoxaluria Type I Primary Hyperoxaluria Type II Primary Hyperoxaluria NonI-NonII |
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Inclusion Criteria:
Exclusion Criteria:
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Any patient with a confirmed diagnosis of primary hyperoxaluria (PH)
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| Name | Affiliation | Role |
|---|---|---|
| John C Lieske, M.D. | Mayo Clinic Department of Nephrology and Hypertension | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Mattel Children's Hospital at UCLA | Los Angeles | California | 90095 | United States | ||
| University of California at Davis |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 15961949 | Result | Lieske JC, Monico CG, Holmes WS, Bergstralh EJ, Slezak JM, Rohlinger AL, Olson JB, Milliner DS. International registry for primary hyperoxaluria. Am J Nephrol. 2005 May-Jun;25(3):290-6. doi: 10.1159/000086360. Epub 2005 Jun 15. |
| Label | URL |
|---|---|
| Oxalosis and Hyperoxaluria Foundation | View source |
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| ID | Term |
|---|---|
| D006960 | Hyperoxaluria, Primary |
| D009397 | Nephrocalcinosis |
| D007669 | Kidney Calculi |
| D006959 | Hyperoxaluria |
| ID | Term |
|---|---|
| D007674 | Kidney Diseases |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
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| Sacramento |
| California |
| 95817 |
| United States |
| Children's Memorial Hospital | Chicago | Illinois | 60614 | United States |
| Mayo Clinic Rochester | Rochester | Minnesota | 55905 | United States |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D002239 | Carbohydrate Metabolism, Inborn Errors |
| D008661 | Metabolism, Inborn Errors |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D002114 | Calcinosis |
| D002128 | Calcium Metabolism Disorders |
| D053040 | Nephrolithiasis |
| D052878 | Urolithiasis |
| D014545 | Urinary Calculi |
| D002137 | Calculi |
| D020763 | Pathological Conditions, Anatomical |
| D013568 | Pathological Conditions, Signs and Symptoms |