神经纤维瘤病国际网络患者注册登记数据库的构建与应用研究

资源简介

神经纤维瘤病国际网络患者注册登记数据库的构建与应用研究

【数据集背景】

本数据集源站标题为《Characterization and utilization of an international neurofibromatosis web-based, patient–entered registry: An observational study》。配套论文《Characterization and utilization of an international neurofibromatosis web-based, patient–entered registry: An observational study》发表于 PLOS ONE（2017），DOI：10.1371/journal.pone.0178639。源站首次发布：2017-06-23。

【数据内容】

源站原始描述：The neurofibromatoses (neurofibromatosis type 1, neurofibromatosis type 2 and schwannomatosis) are rare disorders having clinical manifestations that vary greatly from patient to patient. The rarity and variability of these disorders has made it challenging for investigators to identify sufficient numbers of patients with particular clinical characteristics or specific germline mutations for participation in interventional studies. Similarly, because the natural history of all types of neurofibr…

【数据结构与技术规格】

文件数 4 个，合计 4.42 MB。S1 Text.docx：application/vnd.openxmlformats-officedocument.wordprocessingml.document，38.87 KB。S2 Text.docx：application/vnd.openxmlformats-officedocument.wordprocessingml.document，35.82 KB。S1 Table.xlsx：application/vnd.openxmlformats-officedocument.spreadsheetml.sheet，4.31 MB。数据集 DOI：10.1371/journal.pone.0178639。

【主题与分类】

源站学科分类：Medicine、Biotechnology、Immunology、Biological Sciences not elsewhere classified、Cancer、Science Policy。主题标签：NF Registry、investigator、3 NF conditions、type、CTF-affiliated NF clinics、neurofibromatosi、web-based patient-entered database、patient-reported symptom incidences。

【适用方向】

源站学科分类标注为 Medicine、Biotechnology、Immunology、Biological Sciences not elsewhere classified、Cancer、Science Policy。

【获取与许可】

源站页面：https://plos.figshare.com/articles/dataset/Characterization_and_utilization_of_an_international_neurofibromatosis_web-based_patient_entered_registry_An_observational_study/5140561

使用许可：CC BY 4.0（https://creativecommons.org/licenses/by/4.0/）。

规范引用：Seidlin, Mindell; Holzman, Robert; Knight, Pamela; Korf, Bruce; Miller, Vanessa Rangel; Viskochil, David; et al. (2017). Characterization and utilization of an international neurofibromatosis web-based, patient–entered registry: An observational study. PLOS ONE. Dataset

【使用注意】

· 源站最后修改于 2023-06-02，引用时请注意版本时效。