Researchers ask: what do families want to know from genetic tests?
NCT ID NCT02814747
Summary
This study aimed to understand the preferences and experiences of families whose children have rare developmental disorders when receiving results from advanced genetic testing. Researchers surveyed and interviewed over 500 parents in France to learn what kind of information they wanted before testing and how they felt when results were delivered. The goal was to improve how doctors communicate complex genetic information to families in the future.
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.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for RARE DISEASES are added.
By submitting, you agree to our Terms of use
Contacts and locations
Show contact details
Enter your email to view the contact information for this study.
By submitting, you agree to our Terms of use
Locations
-
CHU Dijon Bourgogne
Dijon, 21079, France
Conditions
Explore the condition pages connected to this study.