Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database.

IF 0.7 4区数学 Q2 MATHEMATICS

Experimental Mathematics Pub Date : 2022-04-05 Epub Date: 2022-03-18 DOI:10.1161/JAHA.121.022338

Elisa A Bradley, Abigail Khan, Demetria M McNeal, Katia Bravo-Jaimes, Amber Khanna, Stephen Cook, Alexander R Opotowsky, Anitha John, Marc Lee, Sara Pasquali, Curt J Daniels, Michael Pernick, James N Kirkpatrick, Michelle Gurvitz

引用次数: 0

Abstract

As more adults survive with congenital heart disease, the need to better understand the long-term complications, and comorbid disease will become increasingly important. Improved care and survival into the early and late adult years for all patients equitably requires accurate, timely, and comprehensive data to support research and quality-based initiatives. National data collection in adult congenital heart disease will require a sound foundation emphasizing core ethical principles that acknowledge patient and clinician perspectives and promote national collaboration. In this document we examine these foundational principles and offer suggestions for developing an ethically responsible and inclusive framework for national ACHD data collection.

查看原文本刊更多论文

全国成人先天性心脏病数据库的运行和伦理考虑。

随着越来越多的成年人因先天性心脏病而存活下来，更好地了解长期并发症和合并症的必要性将变得越来越重要。要公平地为所有患者提供更好的治疗，并使他们在成年早期和晚期都能存活，就需要准确、及时和全面的数据来支持研究和基于质量的计划。全国性的成人先天性心脏病数据收集工作需要一个良好的基础，强调核心伦理原则，承认患者和临床医生的观点并促进全国性的合作。在本文件中，我们将探讨这些基本原则，并就制定一个在伦理上负责任且具有包容性的全国先天性心脏病数据收集框架提出建议。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Experimental Mathematics 数学-数学

CiteScore

1.70

自引率

0.00%

发文量

审稿时长

>12 weeks

期刊介绍： Experimental Mathematics publishes original papers featuring formal results inspired by experimentation, conjectures suggested by experiments, and data supporting significant hypotheses. Experiment has always been, and increasingly is, an important method of mathematical discovery. (Gauss declared that his way of arriving at mathematical truths was "through systematic experimentation.") Yet this tends to be concealed by the tradition of presenting only elegant, fully developed, and rigorous results. Experimental Mathematics was founded in the belief that theory and experiment feed on each other, and that the mathematical community stands to benefit from a more complete exposure to the experimental process. The early sharing of insights increases the possibility that they will lead to theorems: An interesting conjecture is often formulated by a researcher who lacks the techniques to formalize a proof, while those who have the techniques at their fingertips have been looking elsewhere. Even when the person who had the initial insight goes on to find a proof, a discussion of the heuristic process can be of help, or at least of interest, to other researchers. There is value not only in the discovery itself, but also in the road that leads to it.