Rare Kidney Stone Consortium Patient Registry

Part of paid clinical trials in Rochester, Minnesota.

Sponsor
Mayo Clinic
Study ID
NCT00588562
Status
Recruiting
Apply to this trial

Conditions

  • APRT Deficiency
  • Cystinuria
  • Dent Disease
  • Primary Hyperoxaluria

Eligibility Criteria

Sex
ALL
Age
0 Years - 100 Years
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Jul 31, 2003
Status verified
Jul 2025
Primary completion
Jun 30, 2028
Completion
Jun 30, 2028

Study Design

Enrollment
730 participants (estimated)

Arms

  • Arm: Primary Hyperoxaluria patients
    Registry will include data on patients with confirmed diagnosis of Primary Hyperoxaluria.
  • Arm: Dent Disease Patients
    Registry will include data on patients with confirmed diagnosis of Dent Disease.
  • Arm: Cystinuria Patients
    Registry will include data on patients with confirmed diagnosis of Cystinuria.
  • Arm: APRT deficiency Patients
    Registry will include data on patients with confirmed diagnosis of APRT deficiency.

Primary Outcome Measure

Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledge [ Time Frame: Yearly ]

Central Contacts

Locations (3)

FacilityCityStateZIPSite coordinators
Dent Disease Registry -Mayo ClinicRochesterMinnesota55905
Barb M Seide, Study Coord
[email protected]
800-270-4637
Julie B Olson, RN Coord
[email protected]
800-270-4637
John C Lieske, MD (PRINCIPAL_INVESTIGATOR)
Primary Hyperoxaluria Registry - Mayo ClinicRochesterMinnesota55905
Barb M Seide, Study Coord
[email protected]
800-270-4637
Julie B Olson, RN Coord
[email protected]
800-270-4637
Dawn S. Milliner, MD (PRINCIPAL_INVESTIGATOR)
Cystinuria Registry - New York UniversityNew YorkNew York10010
David Goldfarb, MD
[email protected]
212-263-0744
Frank Modersitzki, MPH
[email protected]
216-686-7500
David Goldfarb, MD (PRINCIPAL_INVESTIGATOR)

Find similar trials in Rochester, MN

By research site
Dent Disease Registry -Mayo Clinic· Rochester, MNPrimary Hyperoxaluria Registry - Mayo Clinic· Rochester, MNCystinuria Registry - New York University· New York, NY

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