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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 52B to read as follows: |
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CHAPTER 52B. SICKLE CELL DISEASE REGISTRY |
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Sec. 52B.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. 52B.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 sickle cell disease cases to aid in the cure and |
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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 sickle cell disease cases that occur in |
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this state; and |
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(2) any other information concerning sickle cell |
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disease cases the executive commissioner considers necessary and |
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appropriate to assist with the cure or treatment of sickle cell |
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disease. |
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Sec. 52B.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 the department prescribes, data the department considers |
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necessary and appropriate concerning sickle cell disease cases. |
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Sec. 52B.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 sickle cell disease cases to record and analyze the data |
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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 useful to physicians, other medical |
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personnel, and the public. |
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(b) The executive commissioner shall adopt rules to |
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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 data from health care facilities regarding |
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sickle cell disease cases; |
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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 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) and regulations |
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adopted under that Act; and |
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(B) other applicable laws and regulations |
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governing disclosure of health information. |
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Sec. 52B.005. REPORTS. (a) The department shall submit an |
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annual report to the legislature on 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 52B, Health and Safety Code, as added by this Act. |
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SECTION 3. This Act takes effect September 1, 2025. |