RECRUITING

Rare Kidney Stone Consortium Patient Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases

Quick Facts

Study Start:2003-07
Study Completion:2025-06
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT00588562

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.

Ages Eligible for Study:0 Years to 100 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Individuals must have a definitive diagnosis of Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT Deficiency.
  2. * Individuals have a family history of a sibling with Primary Hyperoxaluria,Dent Disease, Cystinuria or APRT Deficiency.
  1. * Individuals who do not have Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT Deficiency.

Contacts and Locations

Study Contact

Julie B. Olson, RN
CONTACT
507-538-5995
rarekidneystones@mayo.edu
Mayo Clinic Hyperoxaluria Center
CONTACT
1-800-270-4637
hyperoxaluriacenter@mayo.edu

Principal Investigator

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 Locations (Sites)

Dent Disease Registry -Mayo Clinic
Rochester, Minnesota, 55905
United States
Primary Hyperoxaluria Registry - Mayo Clinic
Rochester, Minnesota, 55905
United States
Cystinuria Registry - New York University
New York, New York, 10010
United States

Collaborators and Investigators

Sponsor: 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

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2003-07
Study Completion Date2025-06

Study Record Updates

Study Start Date2003-07
Study Completion Date2025-06

Terms related to this study

Keywords Provided by Researchers

  • PH
  • PH1
  • PH2
  • PH3
  • PHI
  • PHII
  • PHIII
  • PH NonI-NonII
  • Primary Hyperoxaluria
  • Primary Oxalosis
  • Hyperoxaluria
  • Oxalate
  • Cystinuria
  • Cystine
  • APRT
  • Adenine phosphoribosyl transferase deficiency
  • Dent disease
  • Dent

Additional Relevant MeSH Terms

  • Primary Hyperoxaluria
  • Dent Disease
  • Cystinuria
  • APRT Deficiency