N/A
Completed N=52
Enhancing Genomic Laboratory Reports to Enhance Communication and Empower Patients
Intellectual Disability · Autism Spectrum Disorder · Multiple Congenital Anomalies
Source: ClinicalTrials.gov NCT02504502 ↗
Enrolled (actual)
52
Serious AEs
0.0%
Results posted
Jun 2017
Primary outcomePrimary: Satisfaction With Genomic Test Report — 0; 2; 1; 1 Participants
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?"
Outcome Measures
| Outcome | Result | p-value |
|---|---|---|
| PRIMARY Satisfaction With Genomic Test Report |
0; 2; 1; 1; 1; 1 | — |
Eligibility Criteria
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).
Data sourced from ClinicalTrials.gov (NCT02504502). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication. Informational only — not medical advice.