Newborn Screening for Hemoglobinopathies in Rhode Island, 2017.

BACKGROUND: Newborn screening (NBS) is a national initiative for early identification of serious illnesses, the clinical consequences of which can be reduced by disease-specific early interventions. The Rhode Island Department of Health (RIDOH) has been screening for sickle cell disease (SCD) since 1990. In this work the authors sought to determine the success of NBS and explore aspects of the program that could be improved.

METHODS: A convenience sample of PCPs with privileges at Women and Infants Hospital of Rhode Island was surveyed by a Survey Monkey® questionnaire to determine exactly how NBS results were handled in each PCP's office and to gather information on how to improve the process as it currently stands.

RESULTS: The process appeared to work efficiently. Recommendations were made to improve the service, examples of which are provided with this paper.

DISCUSSION: Although NBS has a national focus, the responsibility of ensuring that babies are screened successfully and that follow-up is complete, rests with individual states. This study revealed that the screening process in Rhode Island for SCD is successful but provided suggestions for improvements. The investigators have followed up with the suggestions.