Should doctors call your family? study tests best way to screen for genetic risks

NCT ID NCT05348564

Recruiting now Knowledge-focused Sponsor: University of Maryland, Baltimore Source: ClinicalTrials.gov ↗

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study compares two methods of contacting family members for genetic testing after a person is found to have a gene linked to familial hypercholesterolemia or long QT syndrome. In one group, the study team directly contacts relatives; in the other, the person with the gene contacts their own family. The goal is to see which method leads to more family members getting tested and to understand the ethical and emotional impacts.

What this could mean

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

Active substance: Direct contact of family members by study team vs proband-initiated contact
What this could lead to: If successful, this could show that directly contacting at-risk relatives is more effective for genetic screening, potentially saving lives through early detection.
What could go wrong: This is an early-stage study with only 200 participants, so results may not apply to all populations. The approach may not be widely adopted due to privacy concerns.

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Conditions

The condition(s) this trial relates to.

familial hypercholesterolemia Hyperlipoproteinemia Type II long QT syndrome

As listed by the trial registrant

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

ETHICS FAMILIAL HYPERCHOLESTEROLEMIA GENETIC TESTING LONG QT SYNDROME

Contacts and locations

Locations

University of Maryland Amish Research Clinic
RECRUITING

Lancaster, Pennsylvania, 17602, United States

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