At a glance
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Enhancing Genomic Laboratory Reports to Enhance Communication and Empower Patients
In Brief
A clinical study evaluating enhanced genomic report for Intellectual Disability and 2 related conditions. Completed, enrolled 52 participants.
Detailed Summary
Current lab reports are designed to communicate results from the laboratory to the provider; they are not designed to be accessible to patients. The investigators believe that a new type of genomic test report, tailored for patient- as well as provider-use, will enable patients to have access to information they can understand allowing them to be more involved in the management of their disorders, better navigate the health care system, and make more informed decisions about their health and health care in conjunction with their providers. This approach has the potential to improve outcomes from both the patient and provider perspectives. The investigators propose to study the research question, "Can a genomic laboratory report tailored for both providers and families of patients improve interpretation of complex results and facilitate recommended care by enhancing communication and shared decision making?"
Study Details
Timeline
Interventions
a patient-centered version of a genomic results report delivered to patient through the electronic record portal