罕见和复杂结缔组织病注册中心概览与TogethERN ReCONNET未来场景表1

数据集获取（Figshare）

• 源站标题：Table_1_An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET.DOCX
• DOI：10.3389/fmed.2022.889997.s001
• 发布日期：2022-09-26
• 文件数：1 个
• 文件总体积：59.45 KB
• 源站页面：https://frontiersin.figshare.com/articles/dataset/Table_1_An_overlook_on_the_current_registries_for_rare_and_complex_connective_tissue_diseases_and_the_future_scenario_of_TogethERN_ReCONNET_DOCX/21204515

命令行下载

curl -L -o "Table_1_An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET.DOCX" "https://ndownloader.figshare.com/files/37596401"

文件清单

• Table_1_An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET.DOCX（59.45 KB）

文件总体积 59.45 KB（源站 API 实测）。

数据加载示例（图像类）

from PIL import Image
import glob, os

files = (glob.glob(os.path.join(path, "**", "*.png"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.jpg"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.tif"), recursive=True))
print("图像文件数:", len(files))
img = Image.open(files[0]); print("尺寸/模式:", img.size, img.mode)

# torchvision Dataset 方式:
# from torchvision import datasets
# ds = datasets.ImageFolder(path)  # 要求 子目录=类别

目录组织与标注格式以源站说明和下载后实际文件为准。

数据说明

BackgroundPatient registries play a crucial role in supporting clinical practice, healthcare planning and medical research, offering a real-world picture on rare and complex connective tissue diseases (rCTDs). ERN ReCONNET launched the first European Registry Infrastructure with the aim to plan, upgrade and link registries for rCTDs, with the final goal to promote a harmonized data collection approach all over Europe for rCTDs.
MethodsAn online survey addressed to healthcare professionals and patients’’ representatives active in the field of rCTDs was integrated by an extensive database search in order to build a mapping of existing registries for rCTDs.
FindingsA total of 140 registries were found, 38 of which include multiple diseases. No disease-specific registry was identified for relapsing polychondritis, mixed connective tissue disease and undifferentiated connective tissue disease.
DiscussionThis overview on the existing registries for rCTDs provides a useful starting point to identify the gaps and the strengths of registries on the coverage of rCTDs, and to develop a common data set and data collection approach for the establishment of the TogethERN ReCONNET Infrastructure.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.3389/fmed.2022.889997.s001（source: https://frontiersin.figshare.com/articles/dataset/Table_1_An_overlook_on_the_current_registries_for_rare_and_complex_connective_tissue_diseases_and_the_future_scenario_of_TogethERN_ReCONNET_DOCX/21204515）。