最小数据集
包含牙买加镰状细胞病利益相关者对遗传学研究观点的定性访谈数据集。
基本信息
资源简介
最小数据集
【数据集背景】
本数据集源站标题为《Minimal Data Set.》。源站首次发布：2026-01-23。
【数据内容】
源站原始描述：Advances in genetics and genomics research are revolutionizing the way we understand sickle cell disease (SCD) and approach its treatment and management. Much of this research has been conducted in high-income countries and so much of the available data is skewed towards these populations. Efforts are now being made to facilitate this research in low-and-middle-income countries (LMICs) through capacity building and strengthening. These efforts must also include understanding context specific SCD…
【数据结构与技术规格】
文件数 1 个，合计 12.76 KB。pgph.0005789.s003.xlsx：application/vnd.openxmlformats-officedocument.spreadsheetml.sheet，12.76 KB。数据集 DOI：10.1371/journal.pgph.0005789.s003。
【主题与分类】
源站学科分类：Medicine、Genetics、Biological Sciences not elsewhere classified、Cancer、Science Policy。主题标签：xlink "> advances、sickle cell unit、potential time commitment、establishing trust within、10 individuals living、participants showed support、9 parents affiliated、receiving scd treatment、jamaica </ p、scd genetics research。
【适用方向】
文本类数据可用于医学自然语言处理，如命名实体识别、信息抽取与文本分类。
【获取与许可】
源站页面：https://plos.figshare.com/articles/dataset/_p_Minimal_Data_Set_p_/31139846
使用许可：CC BY 4.0（https://creativecommons.org/licenses/by/4.0/）。
规范引用：Jones, Krystin; Stewart, Kearsley; Asnani, Monika; Royal, Charmaine D. (2026). Minimal Data Set.. PLOS Global Public Health. Dataset
下载信息
注册下载
需要注册 Kaggle 账号并登录后下载，适合需要跟踪下载记录和使用 API 的用户。
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使用方式
数据集获取（Figshare）
- 源站标题：<p>Minimal Data Set.</p>
- DOI：10.1371/journal.pgph.0005789.s003
- 发布日期：2026-01-23
- 文件数：1 个
- 文件总体积：12.76 KB
- 源站页面：https://plos.figshare.com/articles/dataset/_p_Minimal_Data_Set_p_/31139846
命令行下载
curl -L -o "pgph.0005789.s003.xlsx" "https://ndownloader.figshare.com/files/61294793"
文件清单
pgph.0005789.s003.xlsx（12.76 KB）
文件总体积 12.76 KB（源站 API 实测）。
数据说明
Advances in genetics and genomics research are revolutionizing the way we understand sickle cell disease (SCD) and approach its treatment and management. Much of this research has been conducted in high-income countries and so much of the available data is skewed towards these populations. Efforts are now being made to facilitate this research in low-and-middle-income countries (LMICs) through capacity building and strengthening. These efforts must also include understanding context specific SCD stakeholder perspectives and attitudes to guide genetics and genomics research in these populations. This qualitative study used semi-structured in-depth interviews to investigate perspectives on SCD genetics research among 10 SCD healthcare providers, 10 individuals living with SCD and 9 parents affiliated with the Sickle Cell Unit (SCU) in Kingston, Jamaica. Most participants showed support for or a willingness to participate in SCD genetics research as they believed it would lead to improved SCD treatment options and greater knowledge about the disease. Some patients and parents, however, seemed to conflate genetics research participation with receiving SCD treatment or health screenings, pointing to therapeutic and diagnostic misconceptions. Skepticism about genetics research also emerged among some participants due to concerns about loss of privacy, mistrust and fears of misuse, the potential time commitment and inconvenience, and fear of the unknown. Overall, Jamaican SCD stakeholders conveyed an openness towards SCD genetics research participation. However, researchers in genetics must be mindful of the power imbalances that exist between researchers and research participants in LMICs. Steps must be taken to ensure that communities in LMICs are not only able to make contributions to genetic studies, but also that they understand the research goals and the implications of their participation. Working alongside local researchers, providers, patients, and other interested parties will be a key element of facilitating trustworthy and impactful research and establishing trust within these communities.
许可
CC BY 4.0
引用
学术使用请引用 DOI 10.1371/journal.pgph.0005789.s003（source: https://plos.figshare.com/articles/dataset/_p_Minimal_Data_Set_p_/31139846）。
数据缺失？
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