LONG TERM DISEASE OUTCOME AMOUNG PATIENTS WITH JUVENILE RHEUMATOID ARTHRITIS

幼年类风湿性关节炎患者的长期疾病结果

• 批准号: 3748049
• 负责人: EDWARD H GIANNINI
• 金额: --
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/3748049
• 关键词: antiarthritic agent; chronic disease /disorder; functional ability; human subject; juvenile rheumatoid arthritis; longitudinal human study; patient /disease registry; prognosis; questionnaires; skeletal disorder chemotherapy; statistics /biometry

The assessment of disease outcome among patients with juvenile rheumatoid arthritis (JRA) has been hampered by the lack of validated, sensitive instruments for the measurement of functional ability. Existing studies express outcome only in terms of process variables (number of joints with swelling, etc.), broad functional status categories (Steinbrocker class), or whether roentgenographic evidence of joint destruction has occurred. The goals of the project are: (1) to describe disease outcome, expressed as functional ability and chronicity, in a large cohort of patients who have had JRA for a minimum of 5 years, and (2) to provide preliminary data and feasibility information for a future project entitled, "Predictors of Disease Outcome in JRA." The specific aim is to generate a "status report" on the outcome of JRA, expressed as functional ability and chronicity, based in the 1990's. Patients who have had JRA 5 years or longer will be identified by searching the computerized databank of the Special Treatment Center for Juvenile Arthritis at Children's Hospital Medical Center, Cincinnati. A standardized, well validated methodology for conducting disease outcome studies developed at Stanford University will be used for contacting potential subjects and obtaining the appropriate data. Patients or their parents (estimated sample size is 400+) will be asked to complete either the newly available Childhood Health Assessment Questionnaire or, depending upon age, the Health Assessment Questionnaire. Information obtained will be condensed into a "status report" on the outcome of JRA based in the 1990's. Long-term objectives and potential benefits include the following: 1. Future studies of disease outcome may use information from this project as reference data to measure: (1) change in the long-term outcome of JRA, and (2) the impact of new therapies now being developed. 2. The current project will provide preliminary data and feasibility information for a future study, to be submitted as an R01 application entitled, "Predictors of Disease Outcome in JRA."

少年类风湿病患者的疾病结局评估 缺乏验证，敏感的，关节炎（JRA）受到了阻碍 测量功能能力的仪器。 现有研究 仅在过程变量方面表达结果（与 肿胀等），广泛的功能状态类别（Steinbrocker类）， 或者是否发生了关节破坏的摩恩摄影术证据。 该项目的目标是：（1）描述疾病结果，表达 作为功​​能能力和慢性，在大量患者中 JRA至少5年，（2）提供初步 未来项目的数据和可行性信息， “ JRA疾病结果的预测指标”。 具体目的是生成有关JRA结果的“状态报告” 以1990年代的功能能力和慢性表示。 患有JRA 5年或更长时间的患者将由 搜索特殊治疗中心的计算机数据库 辛辛那提儿童医院医疗中心的少年关节炎。 用于进行疾病结果的标准化，良好验证的方法 斯坦福大学开发的研究将用于联系 潜在受试者并获得适当的数据。 病人或他们的 父母（估计样本量为400+）将被要求完成 新近可用的儿童健康评估问卷或 根据年龄，健康评估问卷。 信息 获得的将被凝结成关于JRA结果的“状态报告” 基于1990年代。 长期目标和潜在的好处包括以下内容： 1。对疾病结果的未来研究可能会使用此信息 项目作为参考数据以衡量：（1）长期变化 JRA的结果以及（2）现在开发的新疗法的影响。 2。当前项目将提供初步数据和可行性 未来研究的信息，将作为R01申请提交 题为“ JRA疾病结果的预测因素”。