With genetic disorders being a leading cause of morbidity and mortality in infants, early diagnosis of genetic disease has the potential to change clinical management in many meaningful ways: initiating life-saving treatments, avoiding unnecessary tests and procedures, shortening hospital stays, and empowering families with real-time diagnoses to help with their understanding and decision- making. Through Project Baby Deer, Michigan looks to become the first state in the nation to offer rapid whole genome sequencing (rWGS) to all acutely ill infants and children up to 18 years old that meet clinical criteria, regardless of location or type of insurance.
- Identification of executive champion and clinical champions representing the NICU, PICU and genetics to support the organization’s engagement in Project Baby Deer.
- Adherence to the Project Baby Deer clinical criteria in identifying potential cases.
- Timely submission of clinician survey following all case results.
- Clinician participation in monthly Project Baby Deer case review webinars.
- Provision of financial data to Project Baby Deer evaluation team for sole use in an economic impact study to make a case for payer coverage of rWGS.
- Collaboration and engagement with other Project Baby Deer sites.
- Commitment to provide Project Baby Deer follow-up data for all cases meeting the inclusion criteria who have undergone clinical rapid genome sequencing, with a 5 – 7 day turnaround time, regardless of rWGS funding source.