The intent of the General Assembly is to require the establishment and maintenance of a congenital disabilities surveillance system and registry for the State.

(1) Surveillance system and registry. — Responsibility for establishing and maintaining the system and registry is delegated to the Department of Health and Social Services, along with the authority to exercise certain powers to implement the system and registry. To ensure an accurate and continuing source of data concerning congenital disabilities, the General Assembly by this subchapter requires certain health care practitioners and all hospitals and clinical laboratories to make available to the Department of Health and Social Services information contained in the medical records of patients who have a suspected or confirmed congenital disability diagnosis. All confirmed congenital disabilities shall be classified and coded using the medically recognized system of International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), as well as the 6-digit modified British Pediatric Association system (BPA/ICD-9), and all subsequent revisions to these publications which are used by the Centers for Disease Control and Prevention. It is intended that the product of these efforts will be a central data bank of accurate, precise and current information regarding all congenital disabilities diagnosed or treated, or both, in this State.

(2) This subchapter in no way affects the rights, liabilities, or duties of the Secretary of the Department of Health and Social Services or of persons or guardians of persons requesting services under this subchapter from the operation of laws or prior existing laws and, in particular, § 7940 of Title 29.

60 Del. Laws, c. 63, §  1;  71 Del. Laws, c. 86, §  1;  71 Del. Laws, c. 286, §  3;  78 Del. Laws, c. 179, §  157;  83 Del. Laws, c. 213, § 3; 

The following words, terms and phrases, when used in this subchapter, shall have the meanings ascribed to them in this section, except where the content clearly indicates a different meaning.

(1) “Congenital disability” means any structural or biochemical abnormality, regardless of cause, diagnosed at any time before or after birth, that requires medical or surgical intervention or that interferes with normal growth or development.

(2) “Department” means the Department of Health and Social Services.

(3) “Registry” means a central data bank containing collected, classified, coded and stored data relating to congenital disabilities in children under age 5.

(4) “Surveillance” means the process of identifying and investigating congenital disabilities in children under age 5.

71 Del. Laws, c. 86, §  1;  71 Del. Laws, c. 286, §  3;  78 Del. Laws, c. 179, §  158; 

(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.

71 Del. Laws, c. 86, §  1;  71 Del. Laws, c. 286, §  3;  78 Del. Laws, c. 179, §§  159, 160;  83 Del. Laws, c. 213, § 3; 

(a) Any report of the diagnosis or treatment, of a congenital disability made under this subchapter may not be divulged nor made public in any way that might tend to disclose the identity of the person or family of the person to whom it relates. However, patient-identifying information may be exchanged with the Department of Education and among authorized agencies as approved by the Department and upon receipt by the Department of satisfactory assurances by those agencies of the preservation of the confidentiality of such information.

(b) No individual or organization providing information to the Department in accordance with this subchapter may be deemed to be liable for or held liable for divulging confidential information.

71 Del. Laws, c. 86, §  1;  71 Del. Laws, c. 286, §  3;  78 Del. Laws, c. 179, §  161;  83 Del. Laws, c. 213, § 3; 

Nothing in this subchapter may be construed to compel any person to submit to any medical or public health examination, treatment, or supervision.

71 Del. Laws, c. 86, §  1;  71 Del. Laws, c. 286, §  3;  83 Del. Laws, c. 213, § 3; 

Any person or entity who is required to report the diagnosis or treatment, or both, of any congenital disability in any child under age 5 and who violates any provision of this subchapter shall be fined up to $100 for each violation. Justices of the Peace Courts shall have jurisdiction of any offense under this subchapter.

71 Del. Laws, c. 86, §  1;  71 Del. Laws, c. 286, §  3;  78 Del. Laws, c. 179, §  162; 

The Department, as a collaborating agency, shall provide vision services to children who are eligible for early intervention services under Chapter 31A of Title 14.

83 Del. Laws, c. 213, § 3;