Rare Kidney Stone Consortium Patient Registry

Description

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.

Conditions

Primary Hyperoxaluria, Dent Disease, Cystinuria, APRT Deficiency

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Study Overview

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Study Details

Study overview

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.

Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases

Rare Kidney Stone Consortium Patient Registry

Condition
Primary Hyperoxaluria
Intervention / Treatment

-

Contacts and Locations

Rochester

Dent Disease Registry -Mayo Clinic, Rochester, Minnesota, United States, 55905

Rochester

Primary Hyperoxaluria Registry - Mayo Clinic, Rochester, Minnesota, United States, 55905

New York

Cystinuria Registry - New York University, New York, New York, United States, 10010

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

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

Ages Eligible for Study

0 Years to 100 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Mayo Clinic,

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

Study Record Dates

2025-06