Rare Kidney Stone Consortium Registry for Hereditary Kidney Stone Diseases

What this Trial Is About

This research aims to collect detailed medical information from patients worldwide who have been diagnosed with one of four hereditary kidney stone diseases: Primary Hyperoxaluria (PH), Dent Disease, Cystinuria, or APRT deficiency. The goal is to build a large patient registry to compare symptoms and disease progression among these conditions. Gathering extensive patient data will help improve understanding and care for individuals affected by these rare kidney diseases. Participants' medical information, including age at first symptoms, laboratory results, and kidney function over time, will be entered into a secure computer database by their healthcare providers. The registry includes groups of patients confirmed to have each of the four diseases, with data coded to protect patient identity. Only authorized physicians and staff can access individual patient information. During the study, participants' health progress and symptoms will be monitored through the registry, which will be updated yearly. Researchers will use this data to better understand the diseases' symptoms and progression and to collaborate with patient organizations for sharing knowledge. Participation involves allowing medical data to be collected and securely stored without affecting usual medical care. The study is ongoing with no specific end date for patient involvement.

Rare Kidney Stone Consortium Patient Registry