Table 1

Outcomes and measurements

OutcomeLevelMode of data collectionTiming of data collection
Implementation outcomes
AppropriatenessNeonatal providersVirtual focus groupsPreimplementation and postimplementation of VIGOR at participating sites
FeasibilityNeonatal providersVirtual focus groupsPreimplementation and postimplementation of VIGOR at participating sites
PenetrationInfantTracking rapid ES report, CIR and disclosureThroughout enrolment period
Service outcomes
EquityInfantTracking rapid ES report, CIR and disclosure, as well as chart abstractionThroughout enrolment period
Client outcomes
Function
(provider)
Comfort with genomic medicine
Neonatal providersSurveyPregenomic and postgenomic education survey
Function
(family)
Mental health
FamilySurveyAt enrolment and 3, 6 and 12 months after results disclosure
Symptomatology
Neonatal clinical outcomes
InfantChart abstractionAt NICU discharge/transfer and 12 months after results disclosure
Survey3, 6 and 12 months after results disclosure
Satisfaction (provider)
With disclosure process and the VIGOR study
Neonatal providerSurveyAfter each results disclosure
Qualitative interviewsAfter 3–5 disclosure events
Virtual focus groupsPostimplementation of VIGOR at participating sites
Satisfaction (family)
With disclosure process and participation in VIGOR
FamilySurveyWithin 2 weeks of results disclosure
Qualitative interviews (with subset)Within 2 months of results disclosure
  • CIR, clinical interpretive report; ES, exome sequencing; NICU, neonatal intensive care unit; VIGOR, VIrtual GenOme CenteR.