Sickle cell disease and sickle cell trait registry.

(1) If a newborn as defined in s. 383.145(2) is identified as having sickle cell disease or sickle cell trait through the newborn screening program as described in s. 383.14, the department must:

(a) Notify the parent or guardian of the newborn and provide information regarding the availability and benefits of genetic counseling.

(b) Submit the results of such screening for inclusion in the sickle cell registry established under paragraph (2)(a), unless the parent or guardian of the newborn provides an opt-out form obtained from the department, or otherwise indicates in writing to the department his or her objection to having the newborn included in the sickle cell registry.

(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 individuals who are identified as having sickle cell disease or carrying a sickle cell trait. The sickle cell registry must track sickle cell disease outcome measures, except as provided in paragraph (1)(b).

(b) In addition to newborns identified and included in the registry under subsection (1), other persons living in this state who have been identified as having sickle cell disease or carrying a sickle cell trait may choose to be included in the registry by providing the department with notification as prescribed by rule.

(c) 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.