间歇性囊炎/膀疼痛综合征:为什么全球患者登记册至关重要
Christina Mezes1, Aya Niimi2, George Kasyan3
1Department of Urology, Division of Urogynecology, Wake Forest University School of Medicine, Winston-Salem, NC, USA.
Neurourology and urodynamics
|July 7, 2025
概括
建议建立一个针对间歇性囊炎/膀疼痛综合征 (IC/BPS) 的全球患者登记册,以推进研究并确定患者子组. 这一全面的注册旨在改善全球对IC/BPS的理解和治疗.
科学领域:
- 泌尿器科 泌尿器科 泌尿器科 泌尿器科
- 患者登记册 患者登记册
- 慢性盆腔疼痛综合征 慢性盆腔疼痛综合征
背景情况:
- 间歇性囊炎/膀疼痛综合征 (IC/BPS) 是一种复杂的疾病,对生活质量产生重大影响.
- 目前的研究受限于区域患者登记,阻碍了大规模分析和临床试验招聘.
- 需要一种标准化的,国际化的方法来收集IC/BPS的数据.
研究的目的:
- 建立专家共识,关于全球IC/BPS患者登记册的理由和组成部分.
- 确定必要的患者和诊断特征,以便将其列入注册表.
- 确定可能受益于向治疗的患者子组.
主要方法:
- 形成一个由泌尿科医生和泌尿科医生组成的专家工作组.
- 2025年的一系列会议将讨论全球注册表的好处,挑战和实用性.
- 在PubMed的文献搜索和对注册表提案的共识协议.
主要成果:
- 制定一个全球IC/BPS注册表的框架,用于具有特定症状标准的18岁以上的患者.
- 确定基本数据点,包括人口统计,病史,并发症,以及针对疼痛,尿路症状和生活质量的验证问卷.
- 关于收集关于先前治疗,囊镜和活检结果的数据的共识,强调患者报告的纵向结果.
结论:
- 全球IC/BPS注册表将通过涵盖不同患者群体,克服区域数据的局限性.
- 促进对临床试验的有效招聘,并增强对流行病学趋势和实践变化的理解.
- 能够优化全球的患者护理和质量改善计划.
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