HB 252

Abstract

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

Sickle cell disease; statewide registry; collectionof sickle cell disease case information; penalties; notification;annual report. Creates a statewide registry of sickle cell diseasepatients to be maintained by the State Health Commissioner. The billestablishes: (i) standards and selection criteria for the collectionof sickle cell disease information; (ii) penalties for unauthorizeduse of data from such registry; and (iii) notice requirements forpatients whose personal identifying information has been submittedto such registry. The bill allows patients diagnosed with sicklecell disease to self-report information to the sickle cell diseaseregistry. Under the bill, a patient has the right to opt out of havinghis information reported to the statewide sickle cell disease registry.The bill also directs the Commissioner to submit an annual reportof the information obtained from the sickle cell disease registryto the Governor and the General Assembly by December 1 of each year.