Assessment of Health-Related Quality of Life in Rare Kidney Stone Formers in the Rare Kidney Stone Consortium - RKSC 6408. Assessment of Health-Related Quality of Life in Rare Kidney Stone Formers in the Rare Kidney Stone Consortium - RKSC 6408

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... (for more see dbGaP study page.)

本研究旨在探究纳入罕见肾结石联盟（Rare Kidney Stone Consortium, RKSC）注册库的患者的健康相关生活质量（Health-related Quality Of Life, HRQoL）。生活质量研究聚焦于人群生活的躯体与心理多个维度。目前尚无针对长期随访的肾结石患者的健康相关生活质量数据。本研究将通过电子邮件或邮寄方式，邀请所有纳入RKSC注册库的参与者参与。本研究将对纳入RKSC注册库的罕见肾结石患者的健康相关生活质量进行测评。本研究采用的测评工具为：儿童参与者使用SF-10量表，成年参与者使用SF-36v2量表。调查将在线完成，无电脑或互联网接入条件的参与者可采用纸质版问卷参与。调查将在入组时及此后每年开展一次。SF-36v2量表包含36个问题……（更多详情请参见dbGaP研究页面）