Regional report April 4th 2016

A regional report from Asia Pacific: Establishing newborn screening programs

5th Workshop on Consolidating Newborn Screening Efforts in the Asia-Pacific Region by Dr. Carmencita Padilla

On 4-6 December 2015, newborn screening program managers from countries in the Asia Pacific Region (Bangladesh, Cambodia, China, India, Indonesia, Laos, Mongolia, Nepal, Pakistan, Philippines, Sri Lanka, Vietnam) met convened in Penang, Malaysia, once again in pursuit of a common goal; to support the organization and implementation of a working network of collaborators in the Asia Pacific Region that is focused on improving the health of newborns through improved newborn screening.

This workshop is the fifth in a series of workshops started in 2008. The workshop was attended by the 12 countries in the Asia Pacific Region with less than 50% newborn screening coverage. The workshops focused on ‘Consolidating Newborn Screening Efforts in the Asia Pacific Region.’ These workshops facilitated the sharing of newborn screening program experiences in order to assist in program initiation or program expansion. The Cebu Declaration in 2008 and Manila Declaration in 2010 were initiated by workshop attendees to formally recognize the need for collaborative and cooperative networking in order to facilitate the development of sustainable newborn screening systems.

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During the Penang Workshop, it was found that two participating countries ‒ the Philippines and China ‒ have “graduated” from less than 50% screening coverage. In addition to this, a number of the other countries have shown a marked improvement in their status and performance. Despite this, however, the group still felt that the Penang Declaration was required to further emphasize the need for collaborative and cooperative networking in facilitating the development of sustainable newborn screening systems and documenting the need for holding similar workshops in the future.

The meeting attendees from the 12 countries adopted the following Penang Declaration:
Newborn screening is an important tool in the prevention of disease and disability in our children and thus should be a key part of a comprehensive public health system in all of our countries. As a result of deliberations at the Penang Workshop on Consolidating Newborn Screening Efforts, held on 5-6 December 2015, the following recommendations have been made for prioritization over the next two years.

All countries represented at this workshop shall:

  • Continue regionalization and cooperation among countries by sharing expertise, information and other resources.
  • Continue working towards legislation and/or policy development within the Ministry of Health. This legislation/policy will include the provision of necessary support to establish a systematic national newborn screening program within the context of a global policy for children’s health. This will provide access and follow-up services to all newborns in these countries. Such services should integrate both public and private health care systems.Continue developing population studies to determine the incidence of genetic disorders in the region. This data is needed to provide policy makers with a scientific basis for implementing and/or expanding the appropriate newborn screening testing panel.
  • Continue developing population studies to determine the incidence of genetic disorders in the region. This data is needed to provide policy makers with a scientific basis for implementing and/or expanding the appropriate newborn screening testing panel.
  • Develop strategies to involve more health facilities in the program and to strengthen collaboration within the region.
  • Work towards the improvement of the system and operations including:
    • Building capability through training programs that focus on role-specific activities that build interdisciplinary teams. The aim is to increase the number of trained specialists, genetic counselors and nutritionists involved in the program- Building capacity through the establishment and strengthening of confirmatory laboratory centers;
    • Increased access to treatment and medical foods for patients;
    • Establishment of policies on the retention and use of residual dried blood spots remaining after the completion of screening;
    • Establishment of policies providing privacy to patients whose records may be a part of newborn screening; and,
    • Establishment of external proficiency testing for newborn screening laboratories in order to provide optimal quality assurance.
  • Increase awareness through development of culturally sensitive advocacy materials, and dissemination through various channels/media.
  • Identify creative funding mechanisms such as inclusion in maternal/child health packages and health/social insurance.