Adenine Phosphoribosyl Transferase Deficiency, Cystinuria, Dent Disease, Primary Hyperoxaluria
Conditions
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.
Interventions
OTHERHealth-related Quality of Life in Rare Kidney Stone Questionnaire
Sponsors
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
NYU Langone Health
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
5 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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 |
Countries
Iceland, United States
Outcome results
None listed