Epidemiological analysis of two interstitial cystitis cohorts

项目总结/摘要 间质性膀胱炎/膀胱疼痛综合征（IC/BPS）是一种多因素的慢性综合征， 频率，尿急和膀胱不适（1），影响了估计1000万患者， 美国（2）。尽管对IC/BPS病理生理学的理解仍然有限，但已发表的研究 发现了几种合并症，包括IC/BPS中常见的外阴痛和焦虑合并症（4，5）。 研究表明，这些合并症，反过来，加剧IC/BPS症状，并与 功能、调整、预后和治疗反应率差。 本提案中的研究建立在我们以前的分析和多学科的分析基础上。 慢性盆腔疼痛（MAPP）研究网络的研究方法。我们的400例IC/BPS队列 波士顿儿童医院的病人已经被跟踪了15年， 有机会对IC/BPS并发的各种疾病进行流行病学研究。 我们还将通过调查对IC/BPS患者的大型在线队列进行综合表型分析 通过“社会倾听”系统分析患者的社交媒体帖子， 当与患者进行三角测量时，在识别环境因素方面具有方法上的优势 影响IC/BPS合并症的调查。 这一建议的假设是，广泛的表型将阐明的深度和广度 在IC/BPS中共病的研究，并揭示在IC/BPS的发展中起作用的因素。 紊乱基于这一假设，我们的目标是：1）确定条件的患病率， 人口统计学上不同的队列（例如，焦虑、抑郁、外阴痛）和潜在的环境因素 影响者（例如，家庭不和、贫困、污染）; 2）全面、严格地表型一个子集 这些患者使用PROMIS和PhenX工具包调查共病状况;和3） 描述健康差异对IC/BPS的影响，特别关注健康差异 感染IC/BPS的非裔美国人由于该项目利用现有的队列， 通过远程医疗进行表型分型，这是一种具有成本效益的方法，可以更好地表征表型， 阐明IC/BPS中维度表型的结构和流行病学。

PROJECT SUMMARY/ABSTRACT Interstitial cystitis/bladder pain syndrome (IC/BPS) is a multifactorial, chronic syndrome involving urinary frequency, urinary urgency, and bladder discomfort (1) that affects an estimated 10 million patients in the United States(2). Although understandings of IC/BPS pathophysiology remain limited, published studies have found several comorbidities, including vulvodynia and anxiety comorbidities prevalent in IC/BPS (4, 5). Research suggests that these comorbidities, in turn, exacerbate IC/BPS symptoms and are associated with poor functioning, adjustment, prognosis, and treatment response rates. The research within this proposal builds upon our previous analyses and those of the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. Our cohort of 400 IC/BPS patients at Boston Children's Hospital has been followed for 15 years and provides an extraordinary opportunity for an epidemiological study of the various conditions co-occurring with IC/BPS. We will also comprehensively phenotype a large online cohort of patients with IC/BPS through surveys and systematic analysis of patient social media posts via “social listening”, which could be methodologically advantageous in identifying environmental factors when triangulated with patient surveys influencing IC/BPS comorbidities. The hypothesis underlying this proposal is that extensive phenotyping will elucidate the depth and breadth of co-occurring disorders in IC/BPS and uncover factors that play a role in the development of the disorders. Based on this hypothesis, our aims are to: 1) identify the prevalence of conditions in demographically distinct cohorts (e.g, anxiety, depression, vulvodynia) and potential environmental influencers (e.g., family discord, poverty, pollution); 2) comprehensively and rigorously phenotype a subset of these patients with the use of PROMIS and PhenX toolkit surveys for comorbid conditions; and 3) characterize the impact of health disparities on IC/BPS, with particular attention paid to health disparities affecting African Americans with IC/BPS. As this project leverages existing cohorts and conducts phenotyping via telemedicine, it is a cost-effective approach to better characterizing phenotypes and elucidating the architecture and epidemiology of dimensional phenotypes in IC/BPS.