Ill. Admin. Code tit. 77 § 661.100
The Department shall maintain a Newborn Screening Registry or Registries to collect, store, analyze, release, and report newborn blood spot, newborn hearing and newborn heart screening data including the results of diagnosis and treatment for all cases identified. The Registry or Registries will include information regarding patient and parent demographics, all screening, diagnosis, treatment, intervention, follow-up, parent support, parent-to-parent support and outcome evaluation of children diagnosed through newborn screening. The Department will annually request updated information from the medical specialist or primary care provider concerning developmental milestones for each child diagnosed with a disorder, for which the Department screens, through six years of age.
Ill. Admin. Code tit. 77, § 661.100