Hypertrophic Cardiomyopathy (HCM) Curated Dataset

**Overview:**

- Hypertrophic cardiomyopathy (HCM) affects an estimated 1 in 500 people and possibly as high as 1 in 200. It has also been estimated that ~700,000 adults in the U.S. have HCM, yet ~85% of those adults may remain undiagnosed
- HCM can be a debilitating and life-changing disease that can reduce physical functioning and overall well-being
- HCM is the most common inherited heart disease and can run in families. Rates are similar across ethnic groups, although prevalence increases with age and patients are typically diagnosed in midlife
- HCM is most often caused by abnormal genes in the heart muscle. These genes cause the walls of the heart chamber (left ventricle) to become thicker than normal. The thickened walls may become stiff, and this can reduce the amount of blood taken in and pumped out to the body with each heartbeat

**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
- HCM Patients

156K Total HCM patients sources from EHR
93%+ of patients with race or ethnicity data
57K HCM patients from EHR + Closed Claims
73K HCM patients that are Linkable to other third-party data sources

- HCM Patient Profiles

96% unique patients with Vital Signs and Lab Results
95% patients with Medications
55K unique patients with Left Ventricular Ejection Fraction (LVEF) Values

- Option to link with other data sources available, like Closed Claims and other third-party data within the Datavant ecosystem
- 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 curated data sets, please request access through the Databricks Marketplace.