肌萎缩侧索硬化功能评定量表远程数字评估多中心观察研究数据集

数据集获取（Figshare）

• 源站标题：Remote digital assessment of amyotrophic lateral sclerosis functional rating scale – a multicenter observational study
• DOI：10.6084/m9.figshare.20411363.v1
• 发布日期：2022-08-01
• 文件数：3 个
• 文件总体积：320.67 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/Remote_digital_assessment_of_amyotrophic_lateral_sclerosis_functional_rating_scale_a_multicenter_observational_study/20411363

命令行下载

curl -L -o "iafd_a_2104649_sm2045.pdf" "https://ndownloader.figshare.com/files/36496298"
curl -L -o "iafd_a_2104649_sm2037.pdf" "https://ndownloader.figshare.com/files/36496301"
curl -L -o "iafd_a_2104649_sm2036.pdf" "https://ndownloader.figshare.com/files/36496304"

文件清单

• iafd_a_2104649_sm2045.pdf（74.42 KB）
• iafd_a_2104649_sm2037.pdf（228.86 KB）
• iafd_a_2104649_sm2036.pdf（17.39 KB）

文件总体积 320.67 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

Remote self-assessment of the revised amyotrophic lateral sclerosis functional rating scale (ALSFRS-R) using digital data capture was investigated for its feasibility as an add-on to ALSFRS-R assessments during multidisciplinary clinic visits.
From August 2017 to December 2021, at 12 ALS centers in Germany, an observational study on remote assessment of the ALSFRS-R was performed. In addition to the assessment of ALSFRS-R during clinic visits, patients were offered a digital self-assessment of the ALSFRS-R – either on a computer or on a mobile application (“ALS-App”).
An estimated multicenter cohort of 4,670 ALS patients received care at participating ALS centers. Of these patients, 971 remotely submitted the ALSFRS-R, representing 21% of the multicenter cohort. Of those who opted for remote assessment, 53.7% (n = 521) completed a minimum of 4 ALSFRS-R per year with a mean number of 10.9 assessments per year. Different assessment frequencies were found for patients using a computer (7.9 per year, n = 857) and mobile app (14.6 per year, n = 234). Patients doing remote assessments were more likely to be male and less functionally impaired but many patients with severe disability managed to complete it themselves or with a caregiver (35% of remote ALSFRS-R cohort in King’s Stage 4).
In a dedicated ALS center setting remote digital self-assessment of ALSFRS-R can provide substantial data which is complementary and potentially an alternative to clinic assessments and could be used for research purposes and person-level patient management. Addressing barriers relating to patient uptake and adherence are key to its success.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.20411363.v1（source: https://tandf.figshare.com/articles/dataset/Remote_digital_assessment_of_amyotrophic_lateral_sclerosis_functional_rating_scale_a_multicenter_observational_study/20411363）。