New decision aid aims to ease tough choices for rare heart defect

NCT ID NCT07544979

First seen Jun 27, 2026 · Last updated Aug 12, 2026 · Updated 2 times

Summary

This study is creating a decision aid for people with a rare heart condition called right anomalous aortic origin of a coronary artery (R-AAOCA). The condition raises the risk of sudden cardiac death, but the best management—surgery or careful observation—isn't clear. The aid will help patients, families, and doctors weigh the options together. Researchers will test the tool in 60 participants aged 10-35 to see if it improves shared decision-making, comfort with the choice, and quality of life.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

Active substance
decision aid
What this could lead to
If successful, this tool could help patients and families feel more confident and less anxious when choosing between surgery or monitoring for right AAOCA.
What could go wrong
This is a small pilot study (60 participants) testing a new tool, not a treatment. The aid may not improve decision-making or quality of life as hoped.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • Boston Children's Hospital

    NOT_YET_RECRUITING

    Boston, Massachusetts, 02115, United States

  • Children's Hospital of Philadelphia

    NOT_YET_RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Dell Children's Medical Center

    NOT_YET_RECRUITING

    Austin, Texas, 78723, United States

  • Texas Children's Hospital

    NOT_YET_RECRUITING

    Houston, Texas, 77030, United States

  • Vanderbilt University Medical Center

    RECRUITING

    Nashville, Tennessee, 37232, United States

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