Relating to the establishment of the sickle cell disease registry.
relating to the establishment of the sickle cell disease registry.
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
SECTION 1. Subtitle B, Title 2, Health and Safety Code, is
amended by adding Chapter 52B to read as follows:
CHAPTER 52B. SICKLE CELL DISEASE REGISTRY
Sec. 52B.001. DEFINITION. In this chapter, “health care
facility” means:
(1) a hospital licensed under Chapter 241; or
(2) any other facility that provides diagnostic or
treatment services to patients with sickle cell disease.
Sec. 52B.002. REGISTRY; CONTENTS. (a) The department shall
establish and maintain a sickle cell disease registry in accordance
with this chapter for use as a single repository of accurate,
complete records of sickle cell disease cases to aid in the cure and
treatment of sickle cell disease in this state.
(b) The sickle cell disease registry must include:
(1) a record of sickle cell disease cases that occur in
this state; and
(2) any other information concerning sickle cell
disease cases the executive commissioner considers necessary and
appropriate to assist with the cure or treatment of sickle cell
disease.
Sec. 52B.003. DATA FROM HEALTH CARE FACILITIES. A health
care facility shall provide to the department, in the form and
manner the department prescribes, data the department considers
necessary and appropriate concerning sickle cell disease cases.
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) protect the confidentiality of individuals
diagnosed with sickle cell disease in accordance with Section
159.002, Occupations Code; and
(3) 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 regulations
governing disclosure of health information.
Sec. 52B.005. REPORTS. (a) The department shall submit an
annual report to the legislature on the information obtained under
this chapter.
(b) The department, in cooperation with other sickle cell
disease reporting organizations and research institutions, may
publish reports the department determines are necessary to carry
out the purposes of this chapter.
SECTION 2. As soon as practicable after the effective date
of this Act, the executive commissioner of the Health and Human
Services Commission shall adopt rules necessary to implement
Chapter 52B, Health and Safety Code, as added by this Act.
SECTION 3. This Act takes effect September 1, 2025.
