(1) If a screening provider detects that a newborn or an infant, as those terms are defined in s. 383.145(2), is carrying a sickle cell hemoglobin variant, it must notify the primary care physician of the newborn or infant and submit the results of such screening to the Department of Health for inclusion in the sickle cell registry established under paragraph (2)(a). The primary care physician must provide to the parent or guardian of the newborn or infant information regarding the availability and benefits of genetic counseling. (2)(a) The Department of Health shall contract with a community-based sickle cell disease medical treatment and research center to establish and maintain a registry for newborns and infants who are identified as carrying a sickle cell hemoglobin variant. The sickle cell registry must track sickle cell disease outcome measures. A parent or guardian of a newborn or an infant in the registry may request to have his or her child removed from the registry by submitting a form prescribed by the department by rule.
(b) The Department of Health shall also establish a system to ensure that the community-based sickle cell disease medical treatment and research center notifies the parent or guardian of a child who has been included in the registry that a follow-up consultation with a physician is recommended. Such notice must be provided to the parent or guardian of such child at least once during early adolescence and once during late adolescence. The department shall make every reasonable effort to notify persons included in the registry who are 18 years of age that they may request to be removed from the registry by submitting a form prescribed by the department by rule. The department shall also provide to such persons information regarding available educational services, genetic counseling, and other beneficial resources.
(3) The Department of Health shall adopt rules to implement this section.
