AI-assisted research summary: The department may make contracts, receive disease data, and publish studies. The executive commissioner must adopt rules and guidelines that control registry data, consent, confidentiality, and Medicaid information use.
Sec. 52B.004. DEPARTMENT POWERS; RULES. (a) To implement this chapter, the department may: (1) execute necessary contracts; (2) receive data from health care facilities concerning sickle cell disease cases to record and analyze the data directly related to the disease; and (3) compile and publish statistical and other studies derived from data obtained under this chapter to provide, in an accessible form, information useful to physicians, other medical personnel, and the public. (b) The executive commissioner shall adopt rules to implement this chapter. (c) The executive commissioner by rule shall develop guidelines to: (1) obtain data from health care facilities regarding sickle cell disease cases; (2) require consent of an individual or the individual's legally authorized representative before any information relating to the individual is included in the sickle cell disease registry; (3) allow the individual or the individual's legally authorized representative to withdraw consent for inclusion of the individual's information in the registry; (4) protect the confidentiality of individuals diagnosed with sickle cell disease in accordance with Section 159.002, Occupations Code; and (5) ensure the registry is developed in a manner consistent with: (A) the Health Insurance Portability and Accountability Act of 1996 (Pub. L. No. 104-191) and regulations adopted under that Act; and (B) other applicable laws and rules governing the disclosure of health information. (d) The executive commissioner shall ensure the rules adopted under this section provide protections to restrict the use or disclosure of Medicaid information to purposes only directly connected with the administration of the Medicaid program. Added by Acts 2025, 89th Leg., R.S., Ch. 712 (H.B. 107), Sec. 1, eff. September 1, 2025.