Newborn Screening Information for Healthcare Providers

The Rhode Island Newborn Screening Program is managed by the Rhode Island Department of Health. Blood screening specimens are collected from infants at 24-48 hours of life and sent to the New England Newborn Screening Program Laboratory for analysis in Jamaica Plain, MA. (more) Results are reported to pediatric care providers by the Newborn Screening Coordinator at the VNA of Care New England and are also available in KIDSNET. Abnormal results are reported to pediatricians and specialty care providers via telephone and a follow-up fax. Specialty clinics at Rhode Island Hospital provide diagnosis, treatment, genetic counseling, and ongoing management for infants identified with newborn screening conditions. Early detection, diagnosis, and intervention can prevent death or disability and enable children to reach their full potential.

What you should do

Know the conditions babies are screened for at birth

All newborns in Rhode Island are screened for certain conditions before hospital discharge to identify serious or life-threatening conditions before symptoms begin. The list of conditions appears below.

Provide brochures to your prenatal patients

What You Need to Know before You Have Your Baby introduces expecting moms and dads to the blood and hearing screenings their newborns will receive before they leave the hospital. It also provides information on KIDSNET and on support available to families through home visiting. Order free brochures online.

Use KIDSNET to view screening results and follow-up

Diagnoses, test results, and treatment information are available online in KIDSNET for all babies referred for diagnostic testing based on an abnormal newborn screening. Please use KIDSNET to view all newborn screening results and recommended follow-up for your patients.

Refer to ACT sheets for guidance on specific conditions

The American College of Medical Genetics developed ACT Sheets in 2006 for all newborn screening conditions in their recommended uniform condition panel. These information sheets have been tailored to provide Rhode Island-specific information and are faxed to Rhode Island providers when an infant in their practice has an out of range newborn screening result.

Be aware of the protocol for sickle cell testing of college athletes

Both the National Collegiate Athletic Association (NCAA) and the National Athletic Trainers' Association (NATA) have recommended sickle cell trait testing for college athletes to reduce the incidence of training-related deaths. The Department recommends that providers refer student athletes born before 2001 for hemoglobin electrophoresis testing to determine if they are carriers of the sickle cell gene. Due to inadequate documentation and storage conditions, the Newborn Screening Program cannot provide reliable sickle cell test results for these students. The recommended test can be performed at a clinical laboratory with a physician's order.

Screening Conditions

Critical congenital heart disease

Women and Infants Hospital is piloting pulse oximetry screening as of November 2012 to assess the feasibility of screening all Rhode Island newborns for CCHD prior to hospital discharge. Newport, Kent, Memorial, and South County Hospitals have also adopted pulse oximetry screening as a standard of care. You will be notified if your patient has failed the screening. (more)

Hearing loss

Hearing screening and diagnostic results are available in KIDSNET for every infant. (more)

Hemoglobin conditions

Amino Acid conditions

Fatty acid oxidation conditions

Organic acid conditions

Endrocrine conditions

Cystic Fibrosis (CF)

Other conditions