Study questions when genetic counseling should happen: before or after testing?
NCT ID NCT05422573
First seen Jun 24, 2026 · Last updated Sep 10, 2026 · Updated 5 times
Summary
This study compares three ways of delivering genetic counseling to adults with inherited heart conditions. Some participants get counseling before testing, others get it after, with or without a required phone call. The goal is to see which approach is most efficient and empowering for patients.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- Active substance
- genetic counseling and testing
- What this could lead to
- If successful, this could make genetic counseling more efficient and empowering for patients with inherited heart conditions.
- What could go wrong
- This is a behavioral study, not a treatment trial. Results may not apply to all genetic testing situations or populations.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Phase
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Not a phased trial
Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.
- Participants
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393 people
The number who actually took part.
- Started
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Dec 2022
- Finished
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Jun 2026
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: Cardiovascular panel testing inclusion criteria: 1. Adult (age 18+) scheduled for outpatient genetic counseling in the Johns Hopkins Center for Inherited Heart Diseases, 2. Clinical diagnosis or suspected clinical diagnosis of a potentially inherited cardiovascular disease including a) hypertrophic, dilated, or arrhythmogenic cardiomyopathy, b) ventricular or atrial arrhythmias or an ECG-pattern suspicious for an inherited cardiovascular disease including catecholaminergic polymorphic ventricular tachycardia, long QT syndrome, or Brugada syndrome, or c) a diagnosed or suspected lipid disorder or early-onset coronary artery disease, 3. next-generation cardiovascular sequencing panel clinically indicated. Family specific variant testing inclusion criteria: 1. Adult (age 18+) scheduled for outpatient genetic counseling in the Johns Hopkins Center for Inherited Heart Diseases, 2. Documented pathogenic or likely pathogenic variant in a gene associated with a hereditary cardiomyopathy, arrhythmia syndrome, or lipid disease in a family member, 3. Referred to the Center for Inherited Heart Diseases for family-specific variant testing. Exclusion Criteria: 1. Previous genetic counseling at Johns Hopkins for this clinical indication, 2. Previous genetic testing that definitively identified the genetic cause of the patient's condition, 3. Patient unable to speak or read English, 4. Genetic counseling appointment is not anticipated to include genetic testing (for instance if it was scheduled to discuss family communication or adaptation to a new diagnosis), 5. Next generation sequencing panel not clinically indicated (panel cohort only).
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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
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Johns Hopkins University
Baltimore, Maryland, 21287, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.