Newborn Screening Reference Center

Republic Act 9288 or the Newborn Screening Act of 2004 mandated the NIH to serve as the technical partner of the Department of Health (DOH) in ensuring the quality of service and sustainability of the National Comprehensive Newborn Screening System (NCNBSS). NIH performs this function through the NSRC. The establishment of NSRC, under the BOR’s approval in its 1188th meeting on October 28, 2004, marked a major initiative in addressing the needs of NCNBSS. 

In its 16 years of operations, NSRC has provided technical assistance to the DOH in reaching its goal of screening Filipino newborns for common life-threatening heritable disorders.  It has collaborated with the DOH in the setting-up of the necessary NBS system infrastructures – from the selection and accreditation of Newborn Screening Centers (NSCs), recruitment of health facilities to become participating Newborn Screening (NBS) facilities, selection of G6PD confirmatory centers, confirmatory reference laboratories for hemoglobinopathies and for metabolic disorders; to the establishment of NBS Continuity Clinics that would handle the long-term follow-up management of confirmed patients.

Likewise, NSRC assumes leadership role in examining the totality of the NBS system thus, facilitating the review and evaluation of issues and challenges facing the newborn screening system and ultimately obtaining/coming up with recommendations to strengthen the program. It collaborates with DOH in the monitoring of program implementation in seventeen (17) DOH-Centers for Health Development, twenty-nine (29) G6PD Confirmatory Centers, and fourteen (14) Newborn Screening Continuity Clinics, aside from processing applications of Newborn Screening Facilities which now totals to more than 7000. With these facilities in place, confirmed cases of G6PD deficiencies were detected in 248,000 children, 5,571 with congenital hypothyroidism, 738 with congenital adrenal hyperplasia, 186 with maple syrup urine disease, 150 with galactosemia, and 122 with phenylketonuria. To sustain the NSRC’s efforts, it is instrumental in ensuring that the key implementers of the program in the different levels are equipped through capability building initiatives in all aspects of the program. NSRC holds regular training for management teams of the Newborn Screening Centers (NSCs) and Continuity Clinics.

NSRC is the principal repository of technical information relating to newborn screening standards and practices as well as the office mandated to oversee the content of educational materials. It holds the critical task of overseeing the national database of patients tested and the registry for each condition tested which shall be utilized to develop a plan for long-term outcome evaluation.

It continuously facilitates the undertaking of researches relevant to the improvement of the NBS system and research outputs leading to new knowledge that may become basis for policy changes on newborn screening implementation.  An offshoot of this was the expansion of screening from six (6) to more than twenty-eight (28) disorders. It supports an international collaboration (Cebu Declaration 2008, Manila Declaration 2010, Manila Declaration 2012, Cebu Declaration 2013, Penang Declaration 2015, and Ulanbataar Declaration 2017) signed by 11 countries to facilitate the development of newborn systems in the Asia Pacific Region.

NSRC is an ISO 9001:2015-certified institution. It is working to reach the target that NSCs are ISO 15189-certified by 2030 per the National Policy and Strategic Framework on Expanded Newborn Screening for 2017-2030.

NSRC is responsible for ensuring good laboratory practice standards for NSCs through formulation of laboratory and follow-up protocols, the establishment of external laboratory proficiency testing and certification programs, provision of technical expertise, and the conduct of external audits and other quality assurance activities. Currently, there are seven (7) NSCs nationwide. NSCs will be set-up soon in Mindanao and Bicol.