Comprehensive Study on the Construction of Population-based Twin Registry in Japan

本研究的目的是从多方面探讨建立以人群为基础的双生子登记系统的可能性，特别是以幼儿为重点，初步建立系统的双生子登记系统。研究人员考虑了以下项目：1.关于多胞胎的生命统计数据。2.辅助生殖技术和多胞胎。3.世界上最好的双胞胎登记处。4.多子女家庭的社会和心理环境。5.在全国范围内为世界上多子女家庭提供社会支助。最后总结了多胎生育的公共卫生问题。目前，超过1%的新生儿是多胞胎。然而，关于养育倍数的信息很少，部分原因是缺乏基于人口的倍数登记。世界上大多数双胞胎登记处似乎主要是为遗传流行病学双胞胎研究而建立的。在日本，要想从有年幼子女的家庭中获得高参与率似乎非常困难，特别是如果研究人员只进行遗传双胞胎研究，而没有对参与者进行反馈。提供有助于培养多胞胎的信息对父母来说是一个强大的激励。在这一背景下，开始在都道府县一级建立基于人口的儿童多胞胎数据库。对多子女家庭的人口统计资料进行了详尽的调查，同时试图组织一个支助这些家庭的人际网络。该登记处的目的不仅是帮助人类遗传学和妇幼保健研究，而且还有助于制定多胞胎家庭的福利方案。这一战略受到许多与会者和其他有关方面的欢迎，与其他方法相比，例如使用来自各城市基本居民登记的信息，似乎具有很高的成本效益。

The aim of this study is to examine multilaterally the possibility of constructing population-based twin registry, especially focusing on young children, and preliminary create a systematic twin registry. The researcher considered following items ; 1.Vital statistics regarding multiple births. 2.Assisted reproductive technology and multiple births. 3.Twin registries in the world. 4.Social and psychological circumstances surrounding families with multiples. 5.Nation-wide social support for families with multiples in the world. Finally, public health problems associated with multiple births were summed up. Currently more than 1% of all births are multiples. However, little information regarding nurturing of multiples is available, in part because of the lack of a population-based registry of multiples. The majority of twin registries throughout the world seem to have been constructed primarily for genetic epidemiologic twin studies. It appears to be very difficult to achieve a high participation rate from families with very young children in Japan, particularly if researchers perform only a genetic twin study with no feedback for the participants. Offering information useful for the nurturing of multiples would be a strong incentive for the parents. Given this background, the construction of a population-based database of multiples in childhood at the prefectural level began. An exhaustive search for demographic information concerning families with multiples were performed, and at the same time tried to organize a human network to support such families. This registry aims not only to aid research on human genetics and maternal and child health, but also to contribute to the development of welfare programs for families with multiples. This strategy is welcomed by the many participants and other involved parties, and seems to be highly cost effective compared to other methods, for example using the information from Basic Resident Registration of municipalities.