Improving Congenital Heart Disease Care with EmpowerMyCH

This study is testing a digital tool called "Empower My Congenital Health (EmpowerMyCH)" for adults with congenital heart disease (CHD). This tool aims to help you feel more confident navigating the healthcare system. It includes features like a digital medical passport, up-to-date health information, community support, and patient stories. The researchers want to see if using EmpowerMyCH helps you better understand your health, speak up for yourself, and get to your specialist appointments on time. To join, you must be 18 or older and have congenital heart disease. The study will measure how many people join and how satisfied and accepting they are of the tool's features.

Study design
This interventional study plans to enroll 1000 participants. It is not specified if it is randomized or blinded.
What's involved
Participants will complete surveys to collect baseline and health status information, and will receive intervention components at regular intervals.
Compensation
Not stated in the trial record.
Follow-up
Satisfaction and acceptability of the intervention components will be measured at 0, 6, and 12 months.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06581484

Improving Congenital Heart Disease Care

Recruiting
NAAges 18+InterventionalSupportive care
University of California, San Francisco
~1,000 participants
Updated 2026-01-23 on ClinicalTrials.gov
What's tested:Digital patient empowerment intervention

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Recruitment rate
Measured over 6-12 months
+3 more outcomes measured
Congenital Heart Disease
Behavior, Health
Quality of Life
Empowerment, Patient
Activation, Patient

NCT06581484

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • University of California, San Francisco

    San Francisco, Californiano site contact published

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • Anushree Agarwal, MBBS, MAS · PRINCIPAL_INVESTIGATOR · University of California, San Francisco

Opens a ready-to-send draft in your own email app — review before sending.

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Eligibility criteria

Inclusion

have congenital heart disease
18 years or older
can sign the informed consent

Exclusion

developmentally delayed
unable to consent
  • Recruitment rate6-12 months

    Number of patients recruited out of all the eligible patient approached for recruitment

  • Satisfaction with the intervention components0, 6 and 12 months

    Scores on client satisfaction questionnaire (CSQ-8) survey. Scores are summed across items once. Total scores range from 8 to 32, with the higher number indicating greater satisfaction.

  • Acceptability of the intervention components0, 6 and 12 months

    Rates of app downloads. The investigators will download app data monthly to evaluate the frequency and duration of the use of various intervention components. The investigators will recruit 10 participants for focused group discussions on acceptability of the app.

  • Feasibility of the intervention0, 6 and 12 months

    Ability to download the app or any technical difficulties with the app or its features.