Section 12Sec./Art. 12

Data Management and Applied Research. - All hospitals and Newborn Screening Centers shall periodically submit copies of the results of the screening tests to the NIH Newborn Hearing Screening Reference Center for consolidation of patient databases. The NIH Newborn Hearing Screening Reference Center shall maintain a national database of children tested and a separate registry for those diagnosed with hearing loss. It shall submit reports annually to the DOH on the status of and relevant health information derived from the database.

A plan for long-term outcome evaluation of hearing loss screening utilizing the case registries shall be developed within one (1) year from the effectivity of this Act by the NIH in consultation with various stakeholders.

The Secretary of Health in collaboration with the NIH shall make awards of grants or cooperative agreements to provide technical assistance to agencies to complement an intramural program and to conduct applied research related to infant hearing detection, diagnosis and treatment/intervention. The program shall carry out the following:

(a)Provide technical assistance on data collection and management;

(b)Develop standardized procedures for data management to ensure quality monitoring of infant hearing loss detection, diagnosis and intervention programs;

(c)Study the costs and effectiveness of hearing detection conducted by programs in order to answer issues of importance to policy makers;

(d)Identify the causes and risk factors for congenital hearing loss that might lead to the development of preventive interventions;

(e)Study the effectiveness of early hearing detection, diagnosis and treatment/intervention programs by assessing the health, developmental, cognitive, and language status of these children at school age; and

(f)Promote the sharing of data regarding early hearing loss with birth defects and development disabilities monitoring programs for the purpose of identifying previously unknown causes of hearing loss.