Sickle cell and hemoglobin trait information for medical providers

The California Newborn Screening Program screens newborns for hemoglobinopathies. The screening test also identifies infants who are hemoglobin trait carriers. Carrier follow-up is provided to parents of infants identified with hemoglobin S, C, and D traits. This follow up is important because of the potential risk for couples who are both trait carriers to have a future child with sickle cell disease, a serious chronic disease.

One out of every 95 newborns in California is identified with S, C, or D trait. Hemoglobin trait and disease can present in anyone of any race or ethnicity, not just in African-American and Hispanic/Latine populations. See Hemoglobin Trait Carrier Rate by Race/Ethnicity in CA Newborns, 2013-2022, Table

Mailers are sent to parents of newborns in California who screen positive for S, C, or D trait. Providers listed on the newborn screening form will receive these results too. Parents may bring the mailer to their medical appointment and ask about it.

Provider Responsibilities

1. Encourage parents of a newborn with hemoglobin trait S, C, or D to contact the California Newborn Screening Hemoglobin Trait Follow-up Program at 1 (866) 954-2229 or info@scdfc.org, providing their name, phone number, and email address. The Sickle Cell Disease Foundation will follow up with them. The program offers free, voluntary, and confidential parent trait testing.
2. Note newborn trait status in medical records.
3. Refer parents to genetic counseling if they may have more children.

The Hemoglobin Trait Follow-up Program will provide the following information to parents:

Regarding the newborn

• Which hemoglobin trait the baby’s newborn screening test showed
• The newborn screening test is highly accurate; the baby does not need to be retested for trait
• Trait and disease are different, with explanations of each
• The child’s trait status should be shared and discussed with the child before they reach child-bearing age

Regarding the parent

• Parents are offered testing for hemoglobin traits because of the 25% possibility of sickle cell disease for each pregnancy if both parents have a hemoglobin trait.

For more information

• ​​CDC sickle cell toolkit ​
• CDC sickle cell information for healthcare providers​
  
• Trait information for parents
• Newborn Screening Hemoglobin Trait Follow-up Program
• Parent and caregiver handbook for sickle cell ​​​
• Parent fact sheet on sickle cell disease (PDF, English)
• Parent fact sheet on sickle cell disease (PDF, Spanish)
• Provider fact sheet on sickle cell disease (PDF, English)