Publication of reports; provision of data.

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1. The Division shall publish reports based upon the information obtained pursuant to NRS 439.4929, 439.4931 and 439.4933 and shall make other appropriate uses of the information to report and assess trends in the usage of and access to health care services by patients with sickle cell disease and its variants in a particular area or population, advance research and education concerning sickle cell disease and its variants and improve treatment of sickle cell disease and its variants and associated disorders. The reports must include, without limitation:

(a) Information concerning the locations in which patients diagnosed with sickle cell disease and its variants reside, the demographics of such patients and the utilization of health care services by such patients;

(b) The information described in paragraph (a), specific to patients diagnosed with sickle cell disease and its variants who are over 60 years of age; and

(c) The transition of patients diagnosed with sickle cell disease and its variants from pediatric to adult care upon reaching 18 years of age.

2. The Division shall provide any qualified researcher whom the Division determines is conducting valid scientific research with data from the reported information upon the researcher’s:

(a) Compliance with appropriate conditions as established under the regulations of the State Board of Health; and

(b) Payment of a fee established by the Division by regulation to cover the cost of providing the data.

(Added to NRS by 2019, 2159)


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