Rare Kidney Stone Consortium Patient Registry

Overview

About this study

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.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Please contact the study team to discuss whether or not you are eligible to participate in a study.

Inclusion Criteria:

  • Inclusion of Legacy PH patients from two previous Mayo Clinic Hyperoxaluria Center registry protocol databases will be rolled into the 6401 PH Registry.
  • Patients < 18 years with a history of kidney stones, and/or nephrocalcinosis; OR
  • Patients > 18 yrs with a history of kidney stones, and/or nephrocalcinosis and at least one of the following:
    • Family history of stones or nephrocalcinosis or unexplained kidney failure;
    • Growth retardation due to metabolic bone disease and/or renal failure;
    • Crystals of unusual type;
    • Mild to moderate proteinuria;
    • Elevated serum creatinine and/or reduced GFR;
    • Hypomagnesemia;
    • Increased urinary calcium excretion; 
    • Increased urinary oxalate excretion; or
    • Renal cysts.
  • Family member of a patient who meets any of the above inclusion criteria

Exclusion Criteria:

  • Any patient unwilling to sign a consent.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

John Lieske, M.D.

Open for enrollment

Contact information:

Mayo Clinic Hyperoxaluria Center

(800) 270-4637

hyperoxaluriacenter@mayo.edu

Jacksonville, Fla.

Mayo Clinic principal investigator

Ivan Porter, M.D.

Closed for enrollment

Contact information:

Mayo Clinic Hyperoxaluria Center

(800) 270-4637

hyperoxaluriacenter@mayo.edu

More information

Publications

Publications are currently not available

Study Results Summary

Not yet available

Supplemental Study Information

Not yet available

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CLS-20147549

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