Registry for patients with rare kidney stone disorders
Official title: Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases
Run by Mayo Clinic · NCT00588562 · Data updated 2026-11-12
This study is collecting health information from people with rare kidney stone disorders to better understand their symptoms and improve care for patients like them.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 0 Years to 100 Years |
| Sex | All |
| Enrollment | 730 (estimated) |
| Sponsor | Mayo Clinic Academic / other |
| Locations | 4 sites (Rochester, Minnesota and 3 other locations) |
| Status | Recruiting |
| Started | July 2003 |
| Main results expected | June 2028 |
| Study ends | June 2028 |
| Registry record updated | July 10, 2026 |
| Trial ID | NCT00588562 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are individuals with a confirmed diagnosis of primary hyperoxaluria, Dent disease, cystinuria, or APRT deficiency.
✕Probably not a fit
Patients without a diagnosis of primary hyperoxaluria, Dent disease, cystinuria, or APRT deficiency will not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to collect medical information from patients diagnosed with primary hyperoxaluria, Dent disease, cystinuria, and APRT deficiency to create a comprehensive registry. The registry will facilitate the comparison of symptoms and disease progression among patients, enhancing the understanding of these rare conditions. Data will be securely entered by healthcare providers and will include details such as age at symptom onset, laboratory values, and kidney function over time. The goal is to improve patient care through better insights gained from the collected data.
Why it matters
Potential benefit: If successful, this registry could lead to improved understanding and management of rare kidney stone disorders, ultimately enhancing patient care.
How similar studies have gone: Other studies involving patient registries for rare diseases have shown success in improving understanding and treatment options, indicating that this approach is promising.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Individuals must have a definitive diagnosis of Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT Deficiency. * Individuals have a family history of a sibling with Primary Hyperoxaluria,Dent Disease, Cystinuria or APRT Deficiency. Exclusion Criteria: * Individuals who do not have Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT Deficiency.
Where it's running
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Dent Disease Registry -Mayo Clinic
Rochester, Minnesota, United States Recruiting -
Primary Hyperoxaluria Registry - Mayo Clinic
Rochester, Minnesota, United States Recruiting -
Cystinuria Registry - New York University
New York, New York, United States Recruiting -
APRT Registry - Landspitali Universtiy Hospital
Reykjavik, Iceland Recruiting
Study contacts
- Principal investigator: Dawn S. Milliner, M.D. — Primary Hyperoxaluria Registry - Mayo Clinic, Rochester, MN
- Study coordinator: Julie B. Olson, RN
- Email: rarekidneystones@mayo.edu
- Phone: 507-538-5995
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
Biobank for patients with rare kidney stone diseases
This study is collecting samples from patients with rare kidney stone diseases to help researchers learn more about these conditions and find better treatments to protect kidney health.
-
National Registry for Rare Kidney Diseases
This study is collecting health information from people with rare kidney diseases to help improve treatments and create better care guidelines.
-
Understanding hereditary kidney stone diseases
This study is trying to learn more about hereditary kidney stone diseases and how they affect kidney health over time by looking at patients' blood and urine samples.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.