Many of the countries in the Asia Pacific Region, particularly those with depressed and developing economies are just initiating newborn screening programs for selected metabolic and other congenital disorders (Padilla and Therrell 2007
). Vast cultural, geographic, language, and economic differences exist throughout the region adding to the challenges of developing sustainable newborn screening systems. There are currently more developing programs than developed programs within the region and the status of screening activities in a few countries still remains unclear or unknown. Newborn screening activities in the Asia Pacific region are particularly important since births there account for approximately half (68.5 million) of the 136.7 million babies born in the world. Of these, about 85% are born in five countries (China, India, Indonesia, Bangladesh, Pakistan) (UNICEF. The State of the World’s Children 2011
), which do not yet have organized newborn screening for half or more of their newborn population.
Newborn dried bloodspot screening (NDBS) as a public health improvement strategy has existed in some countries in the Asia Pacific since the 1960s (Australia, Japan, New Zealand), and newborn cord blood screening (NCBS) has a lengthy history in others (Singapore, Hong Kong). Despite attempts over time to begin organized newborn screening in various countries in the region, implementation has been slow (primarily for economic reasons) (Padilla and Therrell 2007
). In recent years, extensive efforts in Korea and Thailand, partially aided by support from the International Atomic Energy Agency (IAEA), have led to implementation of universal NBDS at the national level, and now both countries have NDBS programs that reach essentially all newborns. Most other countries in the region, however, have only begun NDBS implementation efforts during the past decade. Many of these also received partial support from the IAEA (Solanki 2007
); however, direct funding support of this type is no longer available. Despite the unavailability of outside funding from the IAEA, the fledgling NDBS programs in the region have continued their growth and development through self determination.
Building on an informal network of Asia Pacific NDBS collaborators and experts who existed as part of the IAEA Regional Project, newborn screening innovators in the Asia Pacific region have initiated a collaborative network of local newborn screening pioneers. Establishment of a collaborative communications network is intended to facilitate and improve local NDBS program implementation and foster related research collaborations. To ensure up-to-date information exchange, to provide expert advice and training, and to assist in additional networking, interactions with more developed NDBS programs outside the region have been an essential part of the collaborations.
To date, there have been two workshops to facilitate formation of the Asia Pacific Newborn Screening Collaboratives. The 1st Workshop on Consolidating Newborn Screening Efforts in the Asia Pacific Region occurred in Cebu, Philippines, on March 30–April 1, 2008, as a satellite meeting to the 7th Asia Pacific Conference on Human Genetics. The second workshop was held on June 4–5, 2010, in Manila Philippines. Both workshops were hosted by the Philippine Newborn Screening Reference Center (NSRC). Workshop participants included key policy-makers, service providers, researchers, and consumer advocates from 11 countries with less than 50% newborn screening coverage (Bangladesh, China, India, Indonesia, Laos, Mongolia, Pakistan, Palau, Philippines, Sri Lanka, and Vietnam). Expert lectures included NDBS experiences in the United States and the Netherlands, international quality assurance activities and ongoing and potential NDBS-related research activities. Additional meeting support was provided by the U.S. National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the U.S. National Newborn Screening and Genetics Resource Center (NNSGRC), the International Society for Neonatal Screening (ISNS), and the March of Dimes.
As part of both meeting activities, participants shared individual experiences in NDBS program implementation with formal updates of screening information for each country. In order to develop strategies and supporting activities, participants were also divided into working groups with facilitated discussions as part of the agenda. This report reviews the activities and country reports from the Workshops on Consolidating Newborn Screening Efforts in the Asia Pacific Region with emphasis on the second workshop. It also updates the literature on screening activities and implementation/expansion challenges in each of the participating countries.