Redesigning the Care Journey of Patients With Single-ventricle Congenital Heart Disease

Completed

Conditions studied: Single-ventricle, Congenital Heart Disease

In brief

In this three-party collaboration, which includes The Texas Center for Pediatric and Congenital Heart Disease, the Value Institute for Health and Care, and the Design Institute for Health, all from University of Texas (UT) Dell Medical School, the investigators will explore how patient insights, data, storytelling, ideation, and prototyping can be employed to design a care delivery solution that enables patient outcome improvement. The goal of this project is to understand the life journey of patients with single-ventricle congenital heart disease and understand areas of that journey that can be improved. As such, the project intentionally does not start with a hypothesis, but instead seeks to gain insight of single-ventricle patients' care journey and based on that understanding identify opportunities for improvement.

Key facts

Study ID

NCT04613934

Run by

University of Texas at Austin

People needed

142

Starts

2020-02-04

Expected to finish

2020-10-16

Last updated by the study team

2021-04-28

Who can join

Age: 6 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Patients with any diagnosis of single-ventricle congenital heart disease, age 6 and older
• Parents or legal guardians of patients at any age with any diagnosis of single-ventricle congenital heart disease
• Siblings of patients with any diagnosis of single-ventricle congenital heart disease, age 6 and older
• Pregnant parents who have gotten any prenatal diagnosis of single-ventricle congenital heart disease
• Adult partners of adult patients with any diagnosis of single-ventricle congenital heart disease

You may not qualify if…

• Patients with a cognitive disability that prevents completion of the study procedures
• Patients, family members, and partners who do not speak English or Spanish

Where it is running

• University of Texas at Austin — Austin, Texas, United States

Full record on ClinicalTrials.gov

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