Congenital Disabilities Surveillance and Registry Program.

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(a) The Department may adopt, promulgate, amend, and repeal any rules and regulations necessary to accomplish the purpose of this subchapter. These rules and regulations may include the following provisions:

(1) The establishment and maintenance of an up-to-date registry that shall document every diagnosis or treatment, or both, of any congenital disability in any child under age 5 in this State.

(2) a. The establishment of a procedure for reporting to the Department, within 30 days of initial diagnosis or treatment, every occurrence of a congenital disability in any child under age 5 in this State. The procedure must include the reporting of specified information, through a combined system of active and passive surveillance, on every child under age 5 with 1 or more congenital disabilities. Specified information is deemed necessary and appropriate to accomplish the purpose of this subchapter and in accordance with the recommendations from the Centers for Disease Control and Prevention, for any of the following reasons:

1. To identify risk factors for congenital disabilities.

2. To investigate the causes and prevalence of congenital disabilities.

3. To develop preventive strategies to decrease occurrences of congenital disabilities.

4. To analyze incidences, prevalence and trends of congenital disabilities through epidemiological studies.

5. To investigate the morbidity and mortality rates resulting from congenital disabilities.

b. Those required to report to the Department occurrences of congenital disabilities include all of the following:

1. Any physician, surgeon, dentist, podiatrist, or other health-care practitioner who diagnoses or provides treatment, or both, for children under age 5 with congenital disabilities.

2. The designated representative of any hospital, dispensary, or other similar public or private institution that diagnoses or provides treatment, or both, for children under age 5 with congenital disabilities.

3. The designated representative of any clinical laboratory that performs any test which identifies children under age 5 with congenital disabilities.

(3) The establishment of a procedure for the publication and distribution of forms, instructions, and notices required by this subchapter or necessary to accomplish the purpose of this subchapter.

(4) The establishment of a procedure to obtain follow-up information from those required to report occurrences of congenital disabilities under this subchapter. Any follow-up information, including family, physician, hospital, or laboratory contact deemed necessary by the Department, must be submitted to the Department at least 1 time each year by those required to report occurrences of congenital disabilities.

(5) The establishment of a procedure to refer the parent, custodian, or guardian of a child under age 3 who is reported to the registry under this subsection to the Department of Education for services under Chapter 31A of Title 14.

(b) The provisions of this subchapter and any rules or regulations issued under this subchapter do not apply to any person or private institution that, as an exercise of religious freedom, treats the sick or suffering by spiritual means through prayer alone.

(c) A parent, custodian, or guardian of an infant having any congenital disability may refuse disclosure to the surveillance system and registry of the infant's name and identifying information on the grounds that such congenital disability identification is contrary to the religious tenets and practices of the infant's parent, custodian, or guardian.


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