Rare Kidney Stone Consortium Patient Registry
Launched by MAYO CLINIC · Dec 27, 2007
Trial Information
Current as of July 27, 2025
Recruiting
Keywords
ClinConnect Summary
The Rare Kidney Stone Consortium Patient Registry is a clinical trial aimed at gathering important medical information from patients around the world who have specific kidney conditions: Primary Hyperoxaluria, Dent Disease, Cystinuria, and APRT Deficiency. The goal of this study is to create a comprehensive registry that will help researchers understand these conditions better by looking at the similarities and differences in how they affect different patients. By enrolling more patients, the researchers hope to improve care and treatment options for those living with these diseases.
To be eligible for this trial, participants must have a confirmed diagnosis of one of the conditions mentioned or have a sibling with one of these conditions. The trial is open to individuals of all ages, from newborns to seniors. If you choose to participate, you can expect to share your medical history and experiences related to your condition. This information will help drive research and potentially lead to better management strategies for these rare kidney diseases. It's a chance to contribute to a larger understanding that could benefit many people in the future.
Gender
ALL
Eligibility criteria
- Inclusion 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.
- Exclusion Criteria:
- • Individuals who do not have Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT Deficiency.
About Mayo Clinic
Mayo Clinic is a renowned nonprofit medical practice and research institution dedicated to providing comprehensive healthcare and advancing medical knowledge through innovative research and education. With a commitment to patient-centered care, Mayo Clinic conducts numerous clinical trials aimed at exploring new therapies and improving treatment outcomes across various disciplines. Leveraging a multidisciplinary approach, the institution collaborates with leading experts and cutting-edge technology to ensure rigorous scientific standards and ethical practices in all its research endeavors. Through its trials, Mayo Clinic seeks to translate breakthroughs in science into tangible benefits for patients, fostering advancements in medicine that enhance health and quality of life.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Rochester, Minnesota, United States
Rochester, Minnesota, United States
New York, New York, United States
Reykjavik, , Iceland
Patients applied
Trial Officials
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
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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