The results from a survey conducted in 2012 by a collaborative international team, including researchers at the University of Newcastle (NSW) are now available in a preliminary, unpublished report, Parents and caregivers' experiences surrounding diagnosis of their child's genetic condition.We have the researchers' permission to publish the link, with the rider that ... this is unpublished data and cannot be used without the written permission of Dr Linda Campbell.
Contact details are on the study website.
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