Division of Developmental Medicine, Department of Pediatrics, Boston Children's Hospital, MA, USA; Department of Neurology, Boston Children's Hospital, MA, USA; Harvard Medical School, Harvard University, MA, USA.
Division of Developmental Medicine, Department of Pediatrics, Boston Children's Hospital, MA, USA.
J Intellect Disabil. 2024 Mar;28(1):196-215. doi: 10.1177/17446295221133874. Epub 2022 Oct 15.
Down syndrome (DS) is a complex condition associated with multiple medical, developmental, and behavioral concerns. A prospective, longitudinal clinical database was integrated into a specialty Down Syndrome Program, with the goals of better understanding the incidence, course, and impact of co-occurring medical, neurodevelopmental, and mental health conditions in DS. We describe the process of developing the database, including a systematic approach to data collection and database infrastructure, and report on feasibility, challenges, and solutions of initial implementation. Between March 2018 and November 2021, data from 842 patients (ages 4.8 months to 26 years) was collected. Challenges included caregiver form completion as well as time and personnel required for successful implementation. With full integration into clinical visit flow, the database proved to be feasible. The database enables identification of patterns of development and health throughout the lifespan and it facilitates future data sharing and collaborative research to advance care.
唐氏综合征（DS）是一种与多种医学、发育和行为问题相关的复杂病症。一个前瞻性、纵向的临床数据库被整合到一个特殊的唐氏综合征项目中，其目的是更好地了解 DS 中同时发生的医学、神经发育和心理健康状况的发生率、病程和影响。我们描述了数据库的开发过程，包括数据收集和数据库基础设施的系统方法，并报告了初步实施的可行性、挑战和解决方案。在 2018 年 3 月至 2021 年 11 月期间，共收集了 842 名患者（年龄 4.8 个月至 26 岁）的数据。挑战包括照顾者表格的填写以及成功实施所需的时间和人员。随着数据库完全整合到临床就诊流程中，该数据库被证明是可行的。该数据库能够识别整个生命周期的发育和健康模式，并促进未来的数据共享和合作研究，以推进护理。
