Hospitals and providers who diagnose or provide treatment of sickle cell disease and its variants must report information regarding patients, including usage of and access to health care services.
Hospitals, medical laboratories and other facilities that provide screening, diagnostic or therapeutic services to patients with respect to sickle cell disease and its variants (NRS439.4929)
The State Board of Health shall by regulation:
1. Prescribe the form and manner in which information on cases of sickle cell disease and its variants must be reported;
2. Prescribe the information that must be included in each report, which must include, without limitation:
(a) The name, address, age and ethnicity of the patient;
(b) The variant of sickle cell disease with which the person has been diagnosed;
(c) The method of treatment, including, without limitation, any opioid prescribed for the patient and whether the patient has adequate access to that opioid;
(d) Any other diseases from which the patient suffers, including, without limitation, pneumonia, asthma and gall bladder disease;
(e) Information concerning the usage of and access to health care services by the patient; and
(f) If a patient diagnosed with sickle cell disease and its variants dies, his or her age at death; and
3. Establish a protocol for allowing appropriate access to and preserving the confidentiality of the records of patients needed for research into sickle cell disease and its variants.
NRS 439.4929 Establishment and maintenance of system for reporting information; objectives; persons required to report information.
1. The Chief Medical Officer shall, pursuant to the regulations adopted by the State Board of Health pursuant to NRS 439.4931, establish and maintain a system for the reporting of information on sickle cell disease and its variants.
2. The system established pursuant to subsection 1 must include a record of the cases of sickle cell disease and its variants which occur in this State along with such information concerning the cases as may be appropriate to form the basis for:
(a) Conducting comprehensive epidemiologic surveys of sickle cell disease and its variants in this State; and
(b) Evaluating the appropriateness of measures for the treatment of sickle cell disease and its variants.
3. Hospitals, medical laboratories and other facilities that provide screening, diagnostic or therapeutic services to patients with respect to sickle cell disease and its variants shall report the information prescribed by the State Board of Health pursuant to NRS 439.4931 to the system established pursuant to subsection 1.
4. Any provider of health care who diagnoses or provides treatment for sickle cell disease and its variants, except for cases directly referred to the provider or cases that have been previously admitted to a hospital, medical laboratory or other facility described in subsection 3, shall report the information prescribed by the State Board of Health pursuant to NRS 439.4931 to the system established pursuant to subsection 1.
5. As used in this section, “medical laboratory” has the meaning ascribed to it in NRS 652.060.
(Added to NRS by 2019, 2158)
The Division of Public and Behavioral Health is in the process of regulation development that would set the reporting standards for the Sickle Cell Registry, if you would like to be included in the development process, please contact: Julia Peek at jpeek@health.nv.gov.
Originating Legislation: AB254 (2019)
