A nationwide follow-up system is essential for a neonatal screening program.

ABSTRACT

A long-term follow-up study gives many benefits to patients detected by neonatal screening, their families, and all members who are involved in neonatal screening program. However, the follow-up system is not functioning satisfactorily enough in Japan. A nationwide long-term follow-up system needs to be established immediately to make the neonatal screening system complete in Japan.