Rare Kidney Stone Consortium Patient Registry
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age0-100
SponsorMayo Clinic
About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
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.
Disqualifiers
Individuals who do not have Primary Hyperoxaluria, Dent Disease, Cystinuria or APRT Deficiency.
Trial population
Individuals with Primary Hyperoxaluria, Dent Disease, Cystinuria and APRT Deficiency.
Trial design
Design model
Cohort
Time perspective
Other
Treatments tested in this trial
Not listed
Trial groups
730 Participants
are grouped into 4 trial groupsGroup A: Primary Hyperoxaluria patients
Group B: Dent Disease Patients
Group C: Cystinuria Patients
Group D: APRT deficiency Patients
Trial outcomes
Primary outcomes
1
Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledge
The patient Registries will expand knowledge of the clinical expression of these disease by systematically accumulating and analyzing information regarding a larger number of patients than have been studied to date.
Time frame
YearlySecondary outcomes
1
Improved understanding of symptoms and progression of four major diseases of hereditary nephrolithiasis.
The goal of the patient Registries is to collect data about these rare diseases, provide a better understanding of these four conditions and help to develop new treatments.
Time frame
YearlySponsors and contacts
Click on the lead sponsor to view all of their trials.
Mayo Clinic
Lead sponsor
National Institutes of Health (NIH)
Collaborator
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Collaborator
Oxalosis and Hyperoxaluria Foundation (OHF)
Collaborator
Source ClinicalTrials.gov