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A BILL TO BE ENTITLED
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AN ACT
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relating to the establishment of the sickle cell disease registry. |
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BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: |
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SECTION 1. Subtitle B, Title 2, Health and Safety Code, is |
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amended by adding Chapter 52A to read as follows: |
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CHAPTER 52A. SICKLE CELL DISEASE REGISTRY |
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Sec. 52A.001. DEFINITION. In this chapter, "health care |
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facility" means: |
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(1) a hospital licensed under Chapter 241; or |
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(2) any other facility that provides diagnostic or |
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treatment services to patients with sickle cell disease. |
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Sec. 52A.002. REGISTRY; CONTENTS. (a) The department shall |
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establish and maintain a sickle cell disease registry in accordance |
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with this chapter for use as a single repository of accurate, |
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complete records of cases of sickle cell disease to aid in the cure |
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and treatment of sickle cell disease in this state. |
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(b) The sickle cell disease registry must include: |
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(1) a record of cases of sickle cell disease that occur |
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in this state; and |
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(2) any other information concerning cases of sickle |
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cell disease that the executive commissioner considers necessary |
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and appropriate for the cure or treatment of sickle cell disease. |
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Sec. 52A.003. DATA FROM HEALTH CARE FACILITIES. A health |
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care facility shall provide to the department, in the form and |
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manner prescribed by the department, data the department considers |
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necessary and appropriate concerning cases of sickle cell disease. |
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Sec. 52A.004. DEPARTMENT POWERS; RULES. (a) To implement |
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this chapter, the department may: |
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(1) execute necessary contracts; |
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(2) receive data from health care facilities |
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concerning cases of sickle cell disease to record and analyze the |
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data directly related to the disease; and |
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(3) compile and publish statistical and other studies |
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derived from data obtained under this chapter to provide, in an |
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accessible form, information that is useful to physicians, other |
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medical personnel, and the public. |
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(b) The executive commissioner shall adopt rules as |
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necessary to implement this chapter. |
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(c) The executive commissioner by rule shall develop |
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guidelines to: |
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(1) obtain information from health care facilities |
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regarding cases of sickle cell disease; |
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(2) protect the confidentiality of individuals |
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diagnosed with sickle cell disease in accordance with Section |
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159.002, Occupations Code; and |
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(3) ensure that the registry is developed in a manner |
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consistent with: |
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(A) the Health Insurance Portability and |
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Accountability Act of 1996 (Pub. L. No. 104-191); |
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(B) regulations adopted under that Act; and |
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(C) other applicable laws and regulations |
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governing disclosure of health information. |
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Sec. 52A.005. REPORTS. (a) The department shall submit an |
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annual report to the legislature of the information obtained under |
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this chapter. |
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(b) The department, in cooperation with other sickle cell |
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disease reporting organizations and research institutions, may |
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publish reports the department determines are necessary to carry |
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out the purposes of this chapter. |
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SECTION 2. As soon as practicable after the effective date |
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of this Act, the executive commissioner of the Health and Human |
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Services Commission shall adopt rules necessary to implement |
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Chapter 52A, Health and Safety Code, as added by this Act. |
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SECTION 3. This Act takes effect September 1, 2023. |