HMRI Consumer Registry

Data from the HMRI Consumer Registry Survey will be used to determine the proportion of chronic disease out-patients who are willing to be contacted about future research and quantify how frequently they would be willing to be contacted about potential research projects. Support persons, defined as individuals who provide daily care or assistance to a patient, can also complete the Consumer Registry Survey. Survey items, including object type: Demographic information, disease-specific information (such as diagnosis, time to surgery), preferences for research participation, and contact details. Survey item types include text fields and multiple choice (radiobutton). The maximum number of items an individual can answer is 32; the minimum is 12. Survey domains or latent variables: There are no domains or latent variables. Psychometric analysis or development information: This survey does not require psychometric analysis. It was developed using iterative review involving health service researchers, HMRI key stakeholders, and community members. Data collection methods, including time frame: Data will be collected using iPad technology with the assistance of trained HMRI research support persons. Eligible participants are approached by research support persons while waiting for their appointment in a chronic disease or surgical out-patient clinic. The survey takes approximately 7 minutes to complete. Data collection began in December 2012. Inclusion criteria and sample size: To be eligible, participants must be: over the age of 18 years; be attending a neurology, cardiology, respiratory, surgical, or medical oncology out-patient clinic; understand English; and have attended the clinic at least once prior to enrollment. A total of 1400 participants are included across all out-patient clinics. This sample size will be composed of: 400 medical oncology, 400 surgical, 200 neurology, 200 cardiology, and 200 respiratory. Demographic description of participants: Not available at this time. Any anticipated secondary data analysis: None

本研究将使用HMRI患者登记调查（HMRI Consumer Registry Survey）的数据集，以确定愿意就未来研究相关事宜接受联系的慢性病门诊患者比例，并量化其愿意就潜在研究项目接受联系的频率。
为患者提供日常照料或协助的支持人员（support persons）亦可参与填写本项调查。
调查条目涵盖以下内容类型：人口统计学信息、疾病特异性信息（如诊断结果、距手术时长）、研究参与意愿以及联系方式。
调查条目类型包括文本框与单选题（单选按钮）。单份问卷的作答条目数上限为32项，下限为12项。
调查维度或潜变量：本调查未设置任何调查维度与潜变量。
心理测量学分析与开发背景：本调查无需开展心理测量学分析，其开发过程经由卫生服务研究者、HMRI核心利益相关方以及社区成员的迭代评审完成。
数据收集方法与时间范围：数据将借助经培训的HMRI研究支持人员，通过iPad设备完成采集。符合入组标准的参与者在慢性病或外科门诊候诊期间，将由研究支持人员邀请参与调查。单份问卷作答时长约为7分钟，数据采集工作于2012年12月启动。
入组标准与样本量：参与者需满足以下全部条件：年龄满18周岁；就诊于神经内科、心内科、呼吸内科、外科或肿瘤内科门诊；通晓英语；且在入组前至少到该门诊就诊过1次。本研究共纳入1400名门诊患者，样本构成如下：肿瘤内科400名、外科400名、神经内科200名、心内科200名、呼吸内科200名。
参与者人口统计学特征描述：暂未获取相关数据。
预期次生数据分析计划：无。