An observational study in Primary Hyperoxaluria, Cystinuria and Adenine Phosphoribosyl Transferase Deficiency, sponsored by NYU Langone Health. Completed at 3 sites in 2 countries. Open to participants aged 5 Years and older. Per ClinicalTrials.gov, last updated 2022-09-02.
Sponsored by NYU Langone Health · Observational
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.
42 studies on the registry are indexed under Hyperoxaluria, Primary; 11 are open to participants now.
This study's enrollment of 365 is below the median of 730 across 13 observational studies indexed under Hyperoxaluria, Primary.
Browse Hyperoxaluria, Primary studies →NYU Langone Health is the lead sponsor of 1,430 studies on the registry; 258 are open to participants now.
Of its 235 completed or terminated interventional studies of FDA-regulated products, 197 (84%) have results posted.
Counted across the registry records on this site, refreshed daily.
Sample will be selected from the Rare Kidney Stone Consortium registries
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
None, if inclusion criteria are met
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
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
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
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
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
Ran from Aug 2013 to primary completion in Jul 2022, 107 months.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Aug 2022. You cannot join it, but the record below documents what was studied.
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