Autism Clinical Trial
Official title:
Enhancing Genomic Laboratory Reports to Enhance Communication and Empower Patients
Verified date | August 2017 |
Source | Geisinger Clinic |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Interventional |
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?"
Status | Completed |
Enrollment | 52 |
Est. completion date | January 1, 2017 |
Est. primary completion date | January 1, 2017 |
Accepts healthy volunteers | No |
Gender | All |
Age group | N/A to 21 Years |
Eligibility |
Inclusion Criteria: - Research participants who are consented to participate in the WGS Study (#2012-0187). - Providers who have referred participants to the WGS Study (#2012-0187) and who have participated in the WGS genomic medicine workgroup or who have participated in the WGS Program Oversight Committee. Exclusion Criteria: - Participants who are not consented to participate in the WGS Study (#2012-0187) - Providers who have not referred patients to the WGS Study (#2012-0187). - Providers who have not had a relationship with the oversight of the WGS study (#2012- 0187). |
Country | Name | City | State |
---|---|---|---|
n/a |
Lead Sponsor | Collaborator |
---|---|
Geisinger Clinic | Patient-Centered Outcomes Research Institute |
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* Note: There are 20 references in all — Click here to view all references
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Satisfaction With Genomic Test Report | 3 questions on how helpful various parts of the test report were for parents who opened the enhanced report. | 3 months after receipt of enhanced report |
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