Health-related Quality of Life in Rare Kidney Stone

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

365 participants

Study Classification

OBSERVATIONAL

Study Start Date

2013-08-31

Study Completion Date

2022-07-31

Brief Summary

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

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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.

Conditions

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Primary Hyperoxaluria Cystinuria Adenine Phosphoribosyl Transferase Deficiency Dent Disease

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Primary Hyperoxaluria

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)

Health-related Quality of Life in Rare Kidney Stone Questionnaire

Intervention Type OTHER

Cystinuria

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)

Health-related Quality of Life in Rare Kidney Stone Questionnaire

Intervention Type OTHER

Dent Disease

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)

Health-related Quality of Life in Rare Kidney Stone Questionnaire

Intervention Type OTHER

APRT deficiency

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)

Health-related Quality of Life in Rare Kidney Stone Questionnaire

Intervention Type OTHER

Interventions

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Health-related Quality of Life in Rare Kidney Stone Questionnaire

Intervention Type OTHER

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

Minimum Eligible Age

5 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No