Abstract
One in 120 children are born with sickle cell disease (SCD) in Haiti. However, healthcare challenges include isolated newborn screening (NBS) activities and lack of transcranial Doppler ultrasound (TCD) to assess stroke risk. The implementation activities of the "Comparative Study of Children in Haiti and Miami with Sickle Cell Disease (CSHSCD) involved both NBS and TCD implementations in four Haitian clinical sites. We hypothesized that hospital-based SCD NBS and follow-up programs would be feasible in Haiti. Traditional NBS laboratory method with dried blood samples was performed at two Port-au-Prince sites, and the traditional method plus point-of-care (POC) testing was utilized at the two north sites. The rate of clinical follow-up for newborns with SCD as outcome for the NBS intervention was compared to the NBS method. The NBS programs identified SCD in 0.77% of 8,224 newborns over a 24-month period. In the rural hospital assigned to the combination screening, 56% of newborns identified with POC returned for follow-up compared to 0% when POC was not available (p=0.044). Positive newborns and children <6 years of age with SCD at the clinical sites were eligible for study follow-up. Accrual was successful: 165 participants (mean age 42 months, 53% males, 93% SS) were recruited and received oral penicillin. TCD screening was hampered by poor internet and trained staff leaving Haiti, with only one active site conducting screening. Despite challenges, the implementation of NBS and sickle cell programs in Haiti is feasible. We are in the process of understanding how to mitigate implementation limitations.