bill for a statewide sickle cell registry

The text as introduced · 498 words

89R6037 MCF-D

By: Miles
S.B. No. 820

A BILL TO BE ENTITLED

AN ACT

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.