Assessment of Health-related Quality of Life in Rare Kidney Stones

Study ID Alternative Stable ID Type
phs001770 Longitudinal

Study 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.

All participants enrolled in the RKSC registries will be invited, via email or postal mail, to participate in this study.

Health-related quality of life in people with rare kidney stones enrolled in the RKSC registries will be measured. Instruments used in this study are the SF-10 for pediatric participants and SF-36v2 for adult participants. The surveys will be completed online. Participants without a computer or internet access will participate using a paper version of the survey. These surveys will be done at enrollment and annually thereafter.

The SF-36v2 includes 36 questions and is estimated to take 15 minutes for its completion, while the SF-10 includes 10 questions and could be ... (Show More)

Archive Link Archive Accession
dbGaP phs001770

Who archives the data?

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