智利全国脊柱肌萎缩患者医疗监护计划的观察数据

数据集获取（Figshare）

• 源站标题：Observations from a nationwide vigilance program in medical care for spinal muscular atrophy patients in Chile
• DOI：10.6084/m9.figshare.10074149.v1
• 发布日期：2019-10-30
• 文件数：5 个
• 文件总体积：1.45 MB
• 源站页面：https://scielo.figshare.com/articles/dataset/Observations_from_a_nationwide_vigilance_program_in_medical_care_for_spinal_muscular_atrophy_patients_in_Chile/10074149

命令行下载

curl -L -o "0004-282X-anp-77-7-0470-gf01.jpg" "https://ndownloader.figshare.com/files/18160910"
curl -L -o "0004-282X-anp-77-7-0470-gf02.jpg" "https://ndownloader.figshare.com/files/18160916"
curl -L -o "0004-282X-anp-77-7-0470-gf03.jpg" "https://ndownloader.figshare.com/files/18160919"
curl -L -o "Table_1.xls" "https://ndownloader.figshare.com/files/18160922"
curl -L -o "Table_2.xls" "https://ndownloader.figshare.com/files/18160928"

文件清单

• 0004-282X-anp-77-7-0470-gf01.jpg（585.17 KB）
• 0004-282X-anp-77-7-0470-gf02.jpg（545.88 KB）
• 0004-282X-anp-77-7-0470-gf03.jpg（297.08 KB）
• Table_1.xls（9.73 KB）
• Table_2.xls（9.73 KB）

文件总体积 1.45 MB（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

ABSTRACT Spinal muscular atrophy (SMA) has gained much attention in the last few years because of the approval of the first intrathecal treatment for this neurodegenerative disease. Latin America needs to develop the demographics of SMA, timely access to diagnosis, and appropriate following of the standards of care recommendations for patients. These are essential steps to guide health policies. Methods This was a descriptive study of a cohort of SMA patients from all over Chile. We analyzed the clinical, motor functional, and social data, as well as the care status of nutritional, respiratory and skeletal conditions. We also measured the SMN2 copy number in this population. Results We recruited 92 patients: 50 male; 23 SMA type-1, 36 SMA type-2 and 33 SMA type-3. The median age at genetic diagnosis was 5, 24 and 132 months. We evaluated the SMN2 copy number in 57 patients. The SMA type-1 patients were tracheostomized and fed by gastrostomy in a 69.6 % of cases, 65% of SMA type-2 patients received nocturnal noninvasive ventilation, and 37% of the whole cohort underwent scoliosis surgery. Conclusion Ventilatory care for SMA type-1 is still based mainly on tracheostomy. This Chilean cohort of SMA patients had timely access to genetic diagnosis, ventilatory assistance, nutritional support, and scoliosis surgery. In this series, SMA type-1 is underrepresented, probably due to restrictions in access to early diagnosis and the high and early mortality rate.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.10074149.v1（source: https://scielo.figshare.com/articles/dataset/Observations_from_a_nationwide_vigilance_program_in_medical_care_for_spinal_muscular_atrophy_patients_in_Chile/10074149）。