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

这项研究的目的是多边地研究建立基于人口的双胞胎登记系统的可能性，特别是以幼儿为重点，并初步建立一个系统的双胞胎登记系统。研究人员考虑了以下几项：1.关于多胎生育的实际统计数据。2.辅助生殖技术和多胎生育。3.世界上的孪生登记制度。4.多胎家庭周围的社会和心理状况。5.在全国范围内为世界上多胎家庭提供社会支持。最后，总结了与多胞胎有关的公共卫生问题。目前，超过1%的新生儿是多胞胎。然而，关于培育多胎的信息很少，部分原因是缺乏以人口为基础的多胎登记。世界各地的大多数双胞胎登记似乎主要是为遗传流行病学双胞胎研究而建立的。在日本，有年幼子女的家庭似乎很难达到高参与率，特别是如果研究人员只进行了一项基因双胞胎研究，而没有对参与者进行反馈。对于父母来说，提供有助于培育多胎的信息将是一个强有力的激励。在这一背景下，开始在县一级建立一个以人口为基础的儿童多胎数据库。对有关多胞胎家庭的人口统计信息进行了详尽的搜索，同时试图组织一个人际网络来支持这类家庭。这一登记不仅旨在帮助人类遗传学和妇幼健康的研究，而且还有助于为多胞胎家庭制定福利计划。这一战略受到许多参与者和其他有关各方的欢迎，与其他方法相比，似乎具有很高的成本效益，例如使用市政当局基本居民登记的信息。

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.