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

NCT ID NCT07544979

First seen Jun 27, 2026 · Last updated Jun 27, 2026

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.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

coronary artery congenital malformation

As listed by the trial registrant

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

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Boston Children's Hospital

    Boston, Massachusetts, 02115, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania, 19104, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Dell Children's Medical Center

    Austin, Texas, 78723, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Texas Children's Hospital

    Houston, Texas, 77030, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Vanderbilt University Medical Center

    Nashville, Tennessee, 37232, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••