Health-related Quality of Life in Rare Kidney Stone

NYU Langone Health365 enrolled

Overview

Assessment of Health-related Quality of Life in Rare Kidney Stone Formers in the Rare Kidney Stone Consortium

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.

Study Type

OBSERVATIONAL

Enrollment

365

Conditions

Primary Hyperoxaluria Cystinuria Adenine Phosphoribosyl Transferase Deficiency Dent Disease

Interventions

Eligibility

Sex: ALLMin age: 5 Years

Medical Language ↔ Plain English

Inclusion Criteria: * 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 Exclusion Criteria: None, if inclusion criteria are met

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

Outcomes

Primary Outcomes

Assessment of HRQoL in patients with rare kidney stones

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

Time frame: Once a year for up to 5 years after signed consent

Data from ClinicalTrials.gov

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