Expansion of Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN)

描述（由申请人提供）：下尿路功能障碍（LUTD）很常见，其发病率和患病率随着人口年龄的增长而增加。LUTD的症状诊断和治疗成本很高;现有的治疗干预措施既不高效也不持久，并且有其自身的副作用。毫不奇怪，从患者的角度来看，不满意的结果是常见的。总的来说，这些挑战代表了与国家糖尿病、消化和肾脏疾病研究所（NIDDK）的使命一致的重要研究目标。以前的努力，以改善患者报告的结果（PRO）在这方面依赖于不完整的症状测量量表，并已受到阻碍的起源和LUTD的自然史的不完善的理解。对LUTD症状范围的全面重新评估和对具有LUTD症状（表型）的患者的更精确表征可能提供重要的新见解，最终改善患者的生活。NIDDK赞助的下尿路功能障碍症状研究网络（LURN）包括一个数据协调中心（DCC），作为网络的项目和数据管理中心。该项目的目的是扩大DCC，并增加将招募LUTD症状患者进入精心设计的研究的临床研究中心数量。有三个具体目标。第一个是扩大LURN网络的基础设施，以容纳增加的三到四个临床站点，加上支持更大联盟的复杂性的预期增加。第二个具体目标是加强利益攸关方之间的合作，将指导委员会的面对面会议次数从每年一次（目前）增加到三次。第三个目标是扩大LURN联盟的病人报告的结果测量工具，包括计算机化的自适应测试的开发和实施。

DESCRIPTION (provided by applicant): Lower urinary tract dysfunction (LUTD) is common, and its incidence and prevalence are increasing as the population ages. Symptoms of LUTD are costly to diagnose and treat; existing therapeutic interventions are neither highly effective nor durable and have side effects of their own. Not surprisingly, unsatisfactory outcomes from the patient perspective are common. Collectively, these challenges represent important targets of research that are consistent with the mission of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Previous efforts to improve patient reported outcomes (PRO) in this area have relied on incomplete symptom measurement scales and have been hampered by imperfect understanding of the origin and natural history of LUTD. Comprehensive re-evaluation of the symptom universe of LUTD and more precise characterization of patients with symptoms of LUTD (phenotyping) may provide significant new insights, leading ultimately to improved patient lives. The NIDDK-sponsored Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN) includes a Data Coordinating Center (DCC) to serve as the project and data management nexus for the network. The purpose of this project is to expand the DCC, and increase the number of clinical sites that will enroll patients with symptoms of LUTD into carefully designed studies. There are three specific aims. The first is to expand the infrastructure of the LURN network to accommodate the addition of three to four clinical sites, plus the anticipated increase in complexity in supporting a larger consortium. The second specific aim is to enhance the collaboration between stakeholders by increasing the number of face-to-face meetings of the Steering Committee from one (currently) to three annually. The third aim is to expand the LURN consortium's patient-reported outcome measurement tools to include development and implementation of computerized adaptive testing.