Health-related Quality of Life in Rare Kidney Stone

Study Overview
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Brief Summary
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Assessment of Health-related Quality of Life in Rare Kidney Stone Formers in the Rare Kidney Stone Consortium

Detailed Description
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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.

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

Conditions
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Primary Hyperoxaluria, Cystinuria, Adenine Phosphoribosyl Transferase Deficiency, Dent Disease

Intervention / Treatment
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* Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 5 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Primary Hyperoxaluria<br>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) | Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire<br> <br> |
| Cystinuria<br>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) | Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire<br> <br> |
| Dent Disease<br>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) | Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire<br> <br> |
| APRT deficiency<br>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) | Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire<br> <br> |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 | Once a year for up to 5 years after signed consent |