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Rare Kidney Stone Consortium Patient Registry

This study is creating a registry (a collection of medical information) for people with rare kidney stone conditions: Primary Hyperoxaluria, Dent Disease, Cystinuria, or APRT Deficiency. The goal is to gather information from many patients worldwide to better understand these diseases and find improved ways to care for patients. Your doctor or healthcare provider would enter your medical information, such as your age at first symptoms, lab results, and kidney function, into a secure, password-protected online database. This helps researchers compare similarities and differences among patients and learn more about these conditions. The study aims to enroll about 730 participants.

Study design
This is an observational study, meaning researchers will collect information about your health over time. It is not testing a new medication or treatment.
What's involved
Your physician or healthcare provider will enter your medical information into a secure online database. This information will include details like your age at first symptoms, laboratory values, and kidney function.
Compensation
Not stated in the trial record.
Follow-up
The primary goal is to establish and expand registries and share knowledge, measured yearly.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT00588562

Rare Kidney Stone Consortium Patient Registry

Recruiting
Not specifiedAges 0+Observational
Mayo Clinic
~730 participants
Updated 2026-07-10 on ClinicalTrials.gov

At a glance

Recruiting sites
4 of 4 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledge
Measured over Yearly

Conditions

Primary Hyperoxaluria
Dent Disease
Cystinuria
APRT Deficiency

Explore related trials

Adenine Phosphoribosyltransferase DeficiencyCystinuriaDent DiseasePrimary Hyperoxaluria

Where it's being run

4 sites across 3 states
Minnesota2
New York1
Iceland1

Study leadership

  • Dawn S. Milliner, M.D. · PRINCIPAL_INVESTIGATOR · Primary Hyperoxaluria Registry - Mayo Clinic, Rochester, MN
  • David Goldfarb, MD · STUDY_DIRECTOR · Cystinuria Registry, New York University, NY
  • John C Lieske, MD · STUDY_DIRECTOR · Dent Disease Registry, Mayo Clinic, Rochester, MN
  • Vidar Edvardsson, MD · STUDY_DIRECTOR · APRT Registry, Landspitali University Hospital, Iceland

Who to contact

Julie B. Olson, RN
[email protected]
507-538-5995
Email the study team

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Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

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Eligibility criteria

Inclusion

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

Individuals who do not have Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT Deficiency.

What this trial measures

  • Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledgeYearly

    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.