UIC Multi-Ethnic DCM Registry

Recruiting

• Conditions: Heart Failure; Dilated Cardiomyopathy (DCM)

• Registration Number: NCT07145138
• Lead Sponsor: University of Illinois at Chicago

Brief Summary

Dilated cardiomyopathy (DCM), a condition where the heart loses its ability to pump blood throughout the body, is a common cause of death in the United States (US). It affects minorities more frequently and appears to causes greater harm than Whites. However, almost all research related to DCM has been performed in Whites, where up to half of cases run in the family. Several genes have been identified that cause the disease, but we are unsure if these same genes are also responsible for DCM in African Americans or Hispanic/Latino patients. The impact of various medical, social, and financial stressors on the severity of the disease in ethnic minorities also remains unclear. The investigators believe that certain genes are more common in different racial and ethnic groups and the greater medical, social, and financial burden faced by minorities in the US leads to more harm from DCM in these groups. The overall goal of the project is to test whether ethnic minority patients carrying genes that cause DCM experience more adverse effects in part because of various medical, social, and financial burdens. The investigators will first establish the UIC Multi-ethnic DCM Biorepository to look for how often certain genes are found across different race-ethnicity and then ask the question if these genes impact the severity of DCM. Finally, the investigators will study how a person's environment can alter the course of their disease. Through this, the investigators hope and strive to ensure equal and adequate heart care for individuals regardless of their race-ethnicity.

Detailed Description

Not available

Study Timeline

• Study Start: 2024-07-11
• Study First Submitted: 2025-04-08
• Status Verified: 2025-08
• Study First Submitted QC: 2025-08-20
• Last Update Submitted: 2025-08-20
• Study First Posted: 2025-08-28
• Last Update Posted: 2025-08-28
• Primary Completion: 2028-12-31
• Study Completion: 2038-12-31

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 1500

Inclusion Criteria

• Must be at least 18 years of age and be admitted to or seen at a UIH site.
• Subjects must be willing and able to give written, informed consent

Exclusion Criteria

• Adults who are unable to provide consent
• Women who are pregnant at the baseline visit,
• Prisoners
• Individuals who are not yet adults (infants, children, teenagers).

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Likely Pathogenic/Pathogenic Variants	Baseline	Utilizing genomic sequencing, the investigators will obtain blood samples at baseline for study participants and identify utilizing genomic sequencing the prevalence of likely pathogenic/pathogenic (LP/P) variants in dilated cardiomyopathy patients across race-ethnicity.

Secondary Outcome Measures

Name	Time	Method
Severity of Disease Symptoms: Minnesota Living with Heart Failure Questionnaire (MLHFQ) Score	Participants with heart failure or who develop heart failure will complete the digital MLHFQ assessments at 12 months, 24 months, and 60 months after initial enrollment or new heart failure diagnosis.	Minnesota Living with Heart Failure Questionnaire (MLHFQ) Score will be administered to study participants with heart failure at set time points to access symptom burden. Score is based on a range of 0 to 105, with lower scores corresponding to lower symptom burden.

Trial Locations

Locations (1)

University of Illinois Hospital & Health Sciences; 🇺🇸 Chicago, Illinois, United States