Inflammatory Bowel Disease (IBD) Curated Dataset

**Overview:**
Crohn’s disease (CD) and ulcerative colitis (UC), known as inflammatory bowel diseases (IBD), are characterized by chronic inflammation of the gastrointestinal tract.

IBD impacts over 1.5 million Americans, of which 80,000 patients are children under 18, with 70,000 new cases diagnosed each year.

TriNetX’s curated IBD data set seeks to provide research-ready longitudinal patient data specific to patients diagnosed with Chron’s Diseased and Ulcerative Colitis. It is a curated EHR data set with tables filtered for covariates most relevant to the IBD population and risk scores to go along with them.

**Why a curated dataset?**

**Navigating through the complexities of data acquisition for your research shouldn’t be a challenge.**

TriNetX is here to simplify the process. Let our data and platform experts handle the intricate task of data curation with **curated, fit-for-purpose datasets.**

We’ve worked closely with our HCO network to understand specific needs around key therapeutic areas, and crafted **bespoke, research-ready datasets,** ensuring you receive **valuable data without the hassle.**

**Key Features:**
Depending on your research needs, you can leverage multiple sources of data that has all been sourced from TriNetX’s rich US network to create a de-identified, row level patient curated dataset(s):

- Each dataset is manually curated by a team of doctors, data scientists, and key opinion leaders
- Sourced from over 62 U.S. healthcare organizations that represents more than 150+ academic and community hospitals consisting of inpatient and outpatient settings
- Majority of EHR data sources are refreshed every 2 to 4 weeks
- RWD for over 600,000 patients
- EHR data representation:

89% of the patients have race or ethnicity data available
93%of patients have multiple vital signs and lab results
92% of the patients have medications
120,000 patients taking at least 1 biologic used to treat IBD

- Option to link with other data sources available, like Closed Claims and other third-party data within the Datavant ecosystem
- Curated variables like BMI, Charlson Comorbidity Index, and others are included
- More than twelve different curated tables have been created specific to treating IBD
- Normalized to TriNetX’s standards-based master terminology that allows for ease of searching and aggregation
- Created in an OMOP-inspired Native TriNetX common data model
Patient
Diagnosis
Medications
Labs
Vitals
And more…

- A Methodology Guide is included and describes how the curated data set was created
- Data profile and coverage reports accompany each data set
- Access to doctors and data scientists to clarify or ask any outstanding questions

**Common Use Cases:**

- Comparative safety and efficacy
- Treatment patterns
- Patient Journey / Longitudinal Analysis
- Baseline disease severity
- Disease progression

**Sample Data set**
Coming Soon!

**Licensing**
For additional information regarding one of our IBD curated data sets, please request access through the Databricks Marketplace.

**概述：**
克罗恩病（Crohn’s disease, CD）与溃疡性结肠炎（ulcerative colitis, UC），二者统称为炎症性肠病（inflammatory bowel disease, IBD），以胃肠道慢性炎症为主要特征。

炎症性肠病在美国影响超150万人群，其中18岁以下儿童患者达8万名，每年新增确诊病例约7万例。

TriNetX整理的炎症性肠病数据集（curated IBD dataset）旨在为克罗恩病与溃疡性结肠炎确诊患者提供符合研究规范的纵向患者数据。该数据集为经过筛选的电子健康档案（electronic health record, EHR）数据集，针对炎症性肠病人群筛选了最具相关性的协变量，并配套相应的风险评分。

**为何选用整理后数据集？**

为研究获取数据的复杂流程不应成为研究阻碍。TriNetX旨在简化这一流程，由我们的数据与平台专家团队负责复杂的数据整理工作，提供**经过精心整理、贴合研究需求**的数据集。

我们与医疗保健组织（healthcare organization, HCO）网络紧密协作，洞悉关键治疗领域的特定需求，打造**定制化、符合研究标准的数据集**，让您无需费心即可获得**高价值数据**。

**核心特性：**
根据您的研究需求，您可利用多源数据，所有数据均源自TriNetX覆盖广泛的美国医疗网络，生成去标识化的行级患者整理数据集：

- 所有数据集均由医生、数据科学家与行业关键意见领袖组成的团队人工整理
- 数据源自美国超62家医疗保健机构，覆盖150余家学术与社区医院，包含住院与门诊诊疗场景
- 多数电子健康档案数据源每2至4周更新一次
- 覆盖超60万名患者的真实世界数据（real-world data, RWD）
- 电子健康档案数据覆盖情况：
89%的患者可获取种族或民族数据
93%的患者拥有多项生命体征与实验室检查结果
92%的患者拥有用药记录
12万名患者接受过至少一种治疗炎症性肠病的生物制剂治疗
- 支持与Datavant生态内的其他数据源（如闭合索赔数据及其他第三方数据）进行关联
- 包含整理后的变量，如体重指数（body mass index, BMI）、查尔森合并症指数（Charlson Comorbidity Index）等
- 针对炎症性肠病治疗创建了超过12张定制化数据表
- 采用TriNetX标准的标准化主术语体系，便于检索与聚合分析
- 基于受OMOP（Observational Medical Outcomes Partnership）启发的原生TriNetX通用数据模型构建，涵盖患者、诊断、用药、实验室检查、生命体征等模块及更多内容
- 附带方法学指南，详细说明该整理数据集的构建流程
- 每份数据集均配套数据概况与覆盖范围报告
- 可联系医生与数据科学家解答相关疑问

**常见应用场景：**

- 对比安全性与有效性分析
- 治疗模式研究
- 患者病程/纵向分析
- 基线疾病严重程度评估
- 疾病进展研究

**示例数据集**
即将上线！

**授权说明**
如需了解我们的炎症性肠病整理数据集的更多详情，请通过Databricks市场申请访问权限。