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Page 6 of 13 Padilla et al. Rare Dis Orphan Drugs J 2023;2:27 https://dx.doi.org/10.20517/rdodj.2023.38

diagnosed with a condition in the ENBS panel. NBSCCs are manned by a pediatrician and a nurse, who take
charge of long-term care, including referrals to specialists . For patients with metabolic conditions, the
[24]
NBSCCs organize the delivery of medical foods. Currently, there are 33 NBSCCs strategically located
throughout the Philippine archipelago [Figure 3]. Additional satellite clinics were also established to expand
the treatment network. The NBSCCs coordinate with other stakeholders (i.e., local government units -
[24]
LGUs, CHGSs, DOH-CHDs) to ensure delivery of services to patients .

Figure 3. Locations of the 33 newborn screening continuity clinics in the Philippines, 2023.

The CHGSs were established in 2020 and are composed of facilities that cover island-wide services (Luzon,
Visayas, and Mindanao) and facilitate comprehensive clinical evaluation, appropriate case management
(diagnostic and therapeutic), and genetic counseling services for families or individuals with genetic
conditions. The CHGS core teams include a clinical geneticist, a pediatrician or family physician, a nurse, a
dietitian/nutritionist, a pharmacist, a genetic counselor, a psychologist or social worker, and administrative
staff. Their responsibilities include facilitating comprehensive clinical management and genetic counseling
services for families and individuals; assisting NSCs, NSFs, and NBSCCs in acute and long-term case
management; serving as the central repository of medical foods, orphan drugs and products, and other
treatment needs not readily available locally and/or commercially; coordinating the distribution of medical
food, supplies, and drugs to NSCs and NBSCCs; conducting research that contributes evidence-based data
for directing future strategic plans of the national NBS program; collaborating with the Institute of Human
Genetics, National Institutes of Health (NIH-IHG)-in developing management guidelines and other related
advocacy materials targeting relevant stakeholders; submitting periodic reports to NIH-IHG; and assisting
the Newborn Screening Reference Center (NSRC) in its capacity building amongst health personnel of the
NBSCCs.