Should doctors call your family? study tests best way to screen for genetic risks
NCT ID NCT05348564
First seen Jun 24, 2026 · Last updated Jun 24, 2026
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.
Disclaimer
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This is a summary of
the original study
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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.
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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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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University of Maryland Amish Research Clinic
RECRUITINGLancaster, Pennsylvania, 17602, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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.
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.