Parent Education on DNA Testing in the Newborn Screen

描述：(申请人提供)：有关致病DNA的知识 人类基因组计划产生的序列将允许进行基于DNA的测试 纳入新生儿筛查计划，以检测出 遗传性疾病将受益于早期治疗。我们假设 关于遗传学和DNA检测的复杂概念适用于 新生儿筛查需要有重点和深思熟虑的教育 并建议这种信息可以更有效地 呈现--具有更好的即时理解能力和更好的长期理解能力 留存--当通过视频提供时，而不是仅通过书面材料提供。 我们的目标是开发基于视频的教育材料，让新家长了解 DNA测试对新生儿筛查中评估的疾病的意义， 以囊性纤维化(CF)新生儿筛查为模型。我们将优化 基于焦点组和视频后评价的视频内容影响 反馈。我们将比较以标准书面形式通知家长的效果。 提供住院期间、产后视频的教育材料 由互动医院电视网传播的演示文稿， 允许在线教育前和教育后综合评估。最长期限 将对信息的保留情况进行评估。教育在中国的成效 让父母为知情的异议程序做好准备，旨在获得 进行试点新生儿筛查测试的许可也将在#年进行评估。 这群人。按需互动医院内电视教育将 为父母提供关于遗传学问题的具有成本效益的教育手段， 基于DNA的测试的含义，并评估他们对 复杂的概念。

DESCRIPTION: (provided by applicant): Knowledge of disease causing DNA sequences generated by the Human Genome Project will allow for DNA based tests to be incorporated into Newborn Screening programs for the detection of hereditary disorders that would benefit from early treatment. We hypothesize that complex concepts regarding genetics and DNA based testing applicable to Newborn screening requires focused and thoughtfully developed education of parents of newborns and propose that this information can be more effectively presented--with better immediate comprehension and better long-term retention--when provided by video than when offered by written materials alone. We aim to develop video based educational materials to inform new parents about implications of DNA testing for disorders evaluated in the newborn screen, using Cystic Fibrosis (CF) Newborn Screening as a model. We will optimize the impact of the video content based on focus group and post-video evaluation feedback. We will compare the efficacy of informing parents by standard written educational materials to providing an in-hospital, postpartum video presentation disseminated by an interactive hospital television network which allows on-line pre- and post-education comprehension assessments. Longest-term retention of information will be evaluated. The effectiveness of education in preparing parents for the informed dissent process designed for obtaining permission to perform pilot newborn screening tests will also be assessed in this population. On demand interactive in-hospital television education will provide a cost effective means for educating parents about genetics issues, implications of DNA based testing, and assessing their comprehension of the complex concepts.