Table 3.

Summary of approaches that were implemented to quantify health care utilization.

Approach	Description
Medical Records Data
Review of medical records	Investigators and study staff reviewed electronic medical records of newborns at their system of enrollment. Medical records at both BCH and Partners HealthCare were reviewed if newborns were identified with an unexpected monogenic disease risk.
Family Self-Report
Phone calls with families	Study staff called families of newborns with unexpected monogenic disease risks periodically to ask about health care that were received
Surveys	Surveys administered 3 and 10-months after disclosure sessions asked parents to report how often their newborn received genetic counseling or specialist visits
10-month check-in	Parents of newborns randomized to nGS were called after 10 months had passed from disclosure sessions and asked to report follow-up regarding their newborns’ results.
Provider Report
Surveys	Providers of all enrolled newborns were sent surveys asking whether they made referrals or ordered additional tests