Health-related Quality of Life in Rare Kidney Stone
- Conditions
- CystinuriaPrimary HyperoxaluriaAdenine Phosphoribosyl Transferase DeficiencyDent Disease
- Registration Number
- NCT02124395
- Lead Sponsor
- NYU Langone Health
- Brief Summary
Assessment of Health-related Quality of Life in Rare Kidney Stone Formers in the Rare Kidney Stone Consortium
- Detailed Description
The purpose of this study is to learn about Health-related Quality Of Life (HRQoL) in patients enrolled in the Rare Kidney Stone Consortium (RKSC) registries. Quality of life studies look at different aspects of both physical and mental components of people's lives. HRQoL data for people affected by kidney stones are not currently available for people followed over time.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 365
- Qualify to participate in one of the Rare Kidney Stone Registries.
- Be at least 5 years old (for SF-10)
- Are able to communicate using the English language
- Consent to participate in the study (or "assent" if under 18 years old)
- Have internet access with an email account or a valid home address
None, if inclusion criteria are met
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Assessment of HRQoL in patients with rare kidney stones Once a year for up to 5 years after signed consent Assessment of HRQoL in patients with rare kidney stones. Comparison of HRQoL results between rare kidney stone formers, general population and other populations with relevant chronic diseases
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (3)
Primary Hyperoxaluria and Dent Disease Registry - Mayo Clinic
🇺🇸Rochester, Minnesota, United States
New York University School of Medicine - Cystinuria Registry
🇺🇸New York, New York, United States
APRT Registry - Landspitali Universtiy Hospital
🇮🇸Reykjavik, Iceland
Primary Hyperoxaluria and Dent Disease Registry - Mayo Clinic🇺🇸Rochester, Minnesota, United States