Health-related Quality of Life in Rare Kidney Stone

Completed

• Conditions: Cystinuria; Primary Hyperoxaluria; Adenine Phosphoribosyl Transferase Deficiency; Dent Disease
• Interventions: Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire

• 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.

Basic Information
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Recruitment & Eligibility
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Study & Design
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Trial Locations

Study Timeline

• Study Start: 2013-08
• Study First Submitted: 2014-04-23
• Study First Submitted QC: 2014-04-24
• Study First Posted: 2014-04-28
• Primary Completion: 2022-07
• Study Completion: 2022-07
• Status Verified: 2022-08
• Last Update Submitted: 2022-08-31
• Last Update Posted: 2022-09-02

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 365

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

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Exclusion Criteria

None, if inclusion criteria are met

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Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
APRT deficiency	Health-related Quality of Life in Rare Kidney Stone Questionnaire	All rare kidney stone patients enrolled in RKSC registries that are able to communicate using the English language, are able to consent to participation in the study, have internet access with an email account and/or a valid address and are at minimum 5 years of age (for SF-10)
Primary Hyperoxaluria	Health-related Quality of Life in Rare Kidney Stone Questionnaire	All rare kidney stone patients enrolled in RKSC registries that are able to communicate using the English language, are able to consent to participation in the study, have internet access with an email account and/or a valid address and are at minimum 5 years of age (for SF-10)
Cystinuria	Health-related Quality of Life in Rare Kidney Stone Questionnaire	All rare kidney stone patients enrolled in RKSC registries that are able to communicate using the English language, are able to consent to participation in the study, have internet access with an email account and/or a valid address and are at minimum 5 years of age (for SF-10)
Dent Disease	Health-related Quality of Life in Rare Kidney Stone Questionnaire	All rare kidney stone patients enrolled in RKSC registries that are able to communicate using the English language, are able to consent to participation in the study, have internet access with an email account and/or a valid address and are at minimum 5 years of age (for SF-10)

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

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