Health-related Quality of Life in Rare Kidney Stone

NYU Langone Health

Status: Completed

Conditions: Adenine Phosphoribosyl Transferase Deficiency; Dent Disease; Cystinuria; Primary Hyperoxaluria

Treatments: Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT02124395

13-00968

1U54DK083908-01 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

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

Full 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.

Enrollment: 365 patients

Sex: All

Ages: 5+ years old

Volunteers: No Healthy Volunteers

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

Trial design

365 participants in 4 patient groups

Primary Hyperoxaluria

Description:

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)

Treatment:

Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire

Cystinuria

Description:

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)

Treatment:

Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire

Dent Disease

Description:

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)

Treatment:

Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire

APRT deficiency

Description:

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)

Treatment:

Other: Health-related Quality of Life in Rare Kidney Stone Questionnaire