HB252 - Sickle cell disease; statewide registry created, collection of disease case information, report.

3 Co-Sponsors

Sickle cell disease; statewide registry; collection of sickle cell disease case information; penalties; notification; annual report. Creates a statewide registry of sickle cell disease patients to be maintained by the State Health Commissioner. The bill establishes: (i) standards and selection criteria for the collection of sickle cell disease information; (ii) penalties for unauthorized use of data from such registry; and (iii) notice requirements for patients whose personal identifying information has been submitted to such registry. The bill allows patients diagnosed with sickle cell disease to self-report information to the sickle cell disease registry. Under the bill, a patient has the right to opt out of having his information reported to the statewide sickle cell disease registry. The bill also directs the Commissioner to submit an annual report of the information obtained from the sickle cell disease registry to the Governor and the General Assembly by November 1 of each year.