Sickle Cell Disease Voluntary Patient Registry

A BILL TO AMEND CHAPTER 33, TITLE 44, CODE OF LAWS OF SOUTH CAROLINA, 1976, RELATING TO SICKLE CELL DISEASE, SO AS TO ENACT THE "SICKLE CELL DISEASE VOLUNTARY PATIENT REGISTRY ACT"; TO REQUIRE THE SOUTH CAROLINA DEPARTMENT OF HEALTH AND ENVIRONMENTAL CONTROL TO DEVELOP AND MAINTAIN A SICKLE CELL DISEASE VOLUNTARY PATIENT REGISTRY IN WHICH PATIENTS DIAGNOSED WITH SICKLE CELL DISEASE MAY REGISTER; TO ESTABLISH REQUIREMENTS FOR A PHYSICIAN TO SUBMIT THE NAME AND OTHER IDENTIFYING INFORMATION OF A PATIENT DIAGNOSED WITH SICKLE CELL DISEASE TO THE REGISTRY; TO PROHIBIT RELEASE OF INFORMATION CONTAINED IN THE REGISTRY, WITH EXCEPTIONS; TO ALLOW ACCESS TO INFORMATION IN THE REGISTRY BY, AMONG OTHERS, TREATING PHYSICIANS AND OTHER HEALTH CARE PRACTITIONERS TO VERIFY PATIENT REGISTRATION AND HEALTH CARE RESEARCHERS; TO ALLOW A PATIENT TO REVOKE A REGISTRATION; AND FOR OTHER PURPOSES.