Developing Educational Tools for Neonatal Intensive Care Staff Regarding Rapid Genome-wide Sequencing
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Year 2024Type Reach Awards
- Principal investigator Alison Elliott
- Co-lead(s) Horatio Osiovich, University of British Columbia
- Host institution University of British Columbia
- Research location BC Children's Hospital Research Institute
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Team members
- Horatio Osiovich, University of British Columbia
- Lauren Piers, University of British Columbia
- Tasha Wainsten, University of British Columbia
- Isabel (Sunu) Kim, University of British Columbia
- Gustavo Pelligra, Island Health
- Michelle Obrien, BC Women's Hospital
- Kathy Harris, BC Women's Hospital
- Alysssa Hawley, BC Women's Hospital
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Partner(s)
Genome BC
The Neonatal Intensive Care Units (NICUs) at BC Women’s Hospital and Victoria General Hospital care for >2000 critically ill babies each year. Many of these babies are sick because they have genetic conditions which can be very difficult to diagnose (the disorders are rare and many of these babies are premature). There is a new test called genomic sequencing (GS) that looks at a baby’s entire genetic code and can detect a change that may be responsible for the baby’s medical problems. This test has revolutionized the ability to diagnose babies with genetic disorders and is ordered for many babies in the NICU. The results can be difficult to interpret for the doctors who order the test (often it is not clearcut as to whether the change is causing the disorder and sometimes medical problems can be discovered that are not part of the baby’s condition (e.g., risk for cancer). The NICU team is composed of doctors, nurses and other healthcare workers (but not genetic counsellors). We conducted a study of the NICU staff that showed they are not comfortable ordering GS, interpreting the results and want more education about GS. In this project, we will develop educational tools to help the NICU staff look after babies who have had GS.