罕见病成本
基于巴西HCPA患者样本的Machado-Joseph病直接与间接成本及生产力损失数据，用于罕见病卫生经济学研究。
基本信息
资源简介
罕见病成本
【一句话概览】
本数据集是 figshare 公开的结构化表格数据集，收录 1 个文件、合计 9.73 KB，主题涵盖 without curative treatment、study also showed、lost productivity attributable、economic studies associated、joseph &# 8217，可用于统计建模、特征工程与队列分析，CC BY 4.0 许可开放获取。
【数据集背景】
本数据集源站标题为《Costs of rare diseases.》。源站首次发布：2024-09-06。
【数据内容】
源站原始描述：A rare disease is that with a low prevalence in the population. However, it is estimated that there are between 6,000 and 8,000 different types of rare diseases in the world and, generally, they are incurable and deadly. Machado-Joseph’s disease (MJD) is one of these cases; of genetic origin, autosomal dominant, with a high chance of transmission between generations and without curative treatment. Given the specificities of MJD and the lack of economic studies associated with it, this article ai…
【数据结构与技术规格】
文件数 1 个，合计 9.73 KB。Table 1.xls：application/vnd.ms-excel，9.73 KB。数据集 DOI：10.1371/journal.pone.0307885.t001。
【主题与分类】
源站学科分类：Medicine、Biotechnology、Ecology、Sociology、Biological Sciences not elsewhere classified、Science Policy。主题标签：without curative treatment、study also showed、lost productivity attributable、economic studies associated、joseph &# 8217、generally close relatives、diapers costs affect、000 different types、estimate costs across、related costs。
【适用方向】
结构化表格数据可直接用于统计建模、特征工程与队列分析。
【获取与许可】
源站页面：https://plos.figshare.com/articles/dataset/Costs_of_rare_diseases_/26957526
使用许可：CC BY 4.0（https://creativecommons.org/licenses/by/4.0/）。
规范引用：da Silva, Cristiane; França, Marco Tulio Aniceto; Neto, Giácomo Balbinotto (2024). Costs of rare diseases.. PLOS ONE. Dataset
下载信息
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使用方式
数据集获取（Figshare）
- 源站标题：Costs of rare diseases.
- DOI：10.1371/journal.pone.0307885.t001
- 发布日期：2024-09-06
- 文件数：1 个
- 文件总体积：9.73 KB
- 源站页面：https://plos.figshare.com/articles/dataset/Costs_of_rare_diseases_/26957526
命令行下载
curl -L -o "Table 1.xls" "https://ndownloader.figshare.com/files/49056207"
文件清单
Table 1.xls（9.73 KB）
文件总体积 9.73 KB（源站 API 实测）。
数据说明
A rare disease is that with a low prevalence in the population. However, it is estimated that there are between 6,000 and 8,000 different types of rare diseases in the world and, generally, they are incurable and deadly. Machado-Joseph’s disease (MJD) is one of these cases; of genetic origin, autosomal dominant, with a high chance of transmission between generations and without curative treatment. Given the specificities of MJD and the lack of economic studies associated with it, this article aims to estimate the direct and indirect health-related costs of lost productivity attributable to Machado-Joseph’s Disease. The data used were primarily collected at the Hospital de Clínicas de Porto Alegre (HCPA), during the period between October 2019 and March 2020. The bottom-up cost methodology was used, that is to say, to estimate costs across a sample of patients to produce an annual cost per patient. Among the main results, it was found that 90.8% of the sample does not work and of these, 72.73% reported that the reason they had stopped working was due to Machado-Joseph’s disease. The average age of men when they stopped working was 39.05 years of age and for women it was 39.64 years of age. In relation to direct non-medical costs, with rehabilitation and transport, it was found that these items affect about 32% of men’s income and 36% of women’s income, as well as medication and diapers costs affect about 15% of women’s income and 14% of the income of men who are no longer able to work. The study also showed that 50% of caregivers, who are generally close relatives of the patient, do not work. Of these, 33.3% reported having left the labor market to provide assistance to the patient, which means that the cost for families is even higher than that estimated for the patient.
许可
CC BY 4.0
引用
学术使用请引用 DOI 10.1371/journal.pone.0307885.t001（source: https://plos.figshare.com/articles/dataset/Costs_of_rare_diseases_/26957526）。
数据缺失？
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