SESSION ENROLLED VIRGINIA ACTS OF ASSEMBLY ––-- 2024 SESSION CHAPTER E437 An Act to amend the Code of Virginia by adding in Chapter 2 of Title 32.1 an article numbered 21, statewideconsisting registry;of sections numbered 32.1-73.21 through 32.1-73.26, relating to sickle cell disease;

statewide registry;

O L [H 252] L Approved EApril 4, 2024 Be it enacted by the General Assembly of Virginia:

D1. 21, consisting of sections numbered 32.1-73.21 through 32.1-73.26, as follows:n article numbered Article 21.

That the Code of Virginia is amended by adding in Chapter 2 of Title 32.1 an article numbered 21, consisting of sections numbered 32.1-73.21 through 32.1-73.26, as follows:

Article 21.

§Commissioner; 32.1-73.21.

Information from hospitals, clinics, certain laboratories, and physicians supplied to Commissioner;

certain laboratories, and physicians supplied to A.

A physician shalHshall report information on patients having sickle cell disease unless he has determined that a hospital, cl2nic,clinic, or address,in-state sex,pathology race,laboratory diagnosis,has traitreported status,the newborninformation. screening data, and any other pertinent identifying information regarding each such patient.

Such information shall include the name, address, sex, race, diagnosis, trait status, newborn screening data, and any other pertinent identifying information regarding each such patient.

associated3. with the occurrence of sickle cell disease in Virginia.ence, survival, and risk factors 4.

Conducting epidemiological analyses of the incidence, prevalence, survival, and risk factors associated with the occurrence of sickle cell disease in Virginia.

4.

Using such funds as may be appropriated therefor, the Commissioner or his designee may perform on-site data collection of the records of patients having sickle cell disease at those consenting hospitals, clinics, independent pathology laboratories, and physician offices required to report theinformation completenesson andsuch accuracypatients ofpursuant to the statewidereporting sicklerequirements cellof disease§ registry.1-73.2132.1-73.21 in order to ensure B.the completeness and accuracy of the statewide sickle cell disease registry.

B.

reciprocal data-sharing agrA.agreements.

A.

Upon the provision of satisfactory assurances for the preservation of the confidentiality of such information, patient-identifying information may be exchanged with other sickle cell disease registries that have entered into reciprocal data-sharing agreements with the§the 32.1-73.24.Commissioner.

§ 32.1-73.24.

In addition to the remedies provided in § 32.1-27, any person who uses, discloses, or releases data of 2 maintained in the statewide sickle cell disease registry in violation of § 32.1-73.23 shall be subject, in the discretion of the court, to a civil penalty not to exceed $25,000 for each violation, which shall be of 2 paid to the general fund.