Relating to the establishment of the sickle cell disease registry, the official text

H.B. No. 107

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) 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.

Sec. 52B.005. CONFIDENTIALITY. (a) Reports, records, and

information obtained under this chapter:

(1) are not public information;

(2) are not subject to the requirements of Chapter

552, Government Code;

(3) are not subject to subpoena; and

(4) may not otherwise be released or made public

except as provided by this section or Section 52B.004.

(b) The reports, records, and information obtained under

this chapter are for the confidential use of the department and the

persons or public or private entities the department determines are

necessary to carry out the purposes of this chapter.

(c) Medical or epidemiological information may be released:

(1) for statistical purposes in a manner that prevents

identification of individuals, health care facilities, clinical

laboratories, or health care practitioners; or

(2) with the consent of each person identified in the

information.

(d) A state employee may not testify in a civil, criminal,

special, or other proceeding as to the existence or contents of

records, reports, or information concerning an individual's

medical records used in submitting information required under this

chapter unless the individual consents in advance.

(e) Information furnished to a sickle cell disease registry

or a sickle cell researcher under Subsection (c) is for the

confidential use of the sickle cell disease registry or the sickle

cell researcher, as applicable, and is subject to Subsection (a).

(f) The department's institutional review board established

under Chapter 108 shall review and approve requests for access to

information that identifies individuals in the sickle cell disease

registry.

Sec. 52B.006. 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. The Department of State Health Services is

required to implement a provision of this Act only if the

legislature appropriates money specifically for that purpose. If

the legislature does not appropriate money specifically for that

purpose, the department may, but is not required to, implement a

provision of this Act using other money available for that purpose.

SECTION 3. 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 4. This Act takes effect September 1, 2025.

______________________________
______________________________

President of the Senate
Speaker of the House

I certify that H.B. No. 107 was passed by the House on April

28, 2025, by the following vote: Yeas 110, Nays 33, 1 present, not

voting; and that the House concurred in Senate amendments to H.B.

No. 107 on May 28, 2025, by the following vote: Yeas 96, Nays 31, 2

present, not voting.

______________________________

Chief Clerk of the House

I certify that H.B. No. 107 was passed by the Senate, with

amendments, on May 20, 2025, by the following vote: Yeas 25, Nays

6.

______________________________

Secretary of the Senate

APPROVED: __________________

Date

__________________

Governor