数据表1：巴西公共医疗系统中C1抑制剂缺乏所致遗传性血管性水肿患者使用达那唑治疗的真实世界研究

数据集获取（Figshare）

• 源站标题：Data_Sheet_1_A real-world study of hereditary angioedema patients due to C1 inhibitor deficiency treated with danazol in the Brazilian Public Health System.docx
• DOI：10.3389/fmed.2024.1343547.s001
• 发布日期：2024-09-06
• 文件数：1 个
• 文件总体积：703.53 KB
• 源站页面：https://frontiersin.figshare.com/articles/dataset/Data_Sheet_1_A_real-world_study_of_hereditary_angioedema_patients_due_to_C1_inhibitor_deficiency_treated_with_danazol_in_the_Brazilian_Public_Health_System_docx/26955994

命令行下载

curl -L -o "Data_Sheet_1_A real-world study of hereditary angioedema patients due to C1 inhibitor deficiency treated with danazol in the Brazilian Public Health S.docx" "https://ndownloader.figshare.com/files/49053895"

文件清单

• Data_Sheet_1_A real-world study of hereditary angioedema patients due to C1 inhibitor deficiency treated with danazol in the Brazilian Public Health S.docx（703.53 KB）

文件总体积 703.53 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

IntroductionHereditary angioedema (HAE) due to C1 inhibitor (C1-INH) deficiency is an ultra-rare autosomal dominant inherited disease that affects 1 in 67,000 people in the world. The attacks are based on subcutaneous and submucosal edema that can lead to death if not properly managed. Considering the lack of information on the clinical management of Brazilian patients with HAE, this study aimed to identify and characterize patients with HAE-C1-INH that used danazol prophylactic treatment in the Brazilian Public Health System (SUS) and the healthcare resource utilization (HCRU).
MethodsThis was an observational retrospective database study with patients treated with danazol from January 2011 until December 2021 within the SUS. The HAE cohort included patients with 12 years or older with at least one record for ICD-10 D84.1, one claim for danazol record, and at least 6 months of available history in the database.
ResultsOur study included 799 patients treated in the SUS, with a mean (SD) age at danazol initiation of 40 years (16). The number of patients with HAE showed a similar distribution over this 10-year period analyzed with the highest number of patients in 2015 (n = 509) and 2016 (n = 480). A total of 253 (32%) patients had a record of at least one attack. Of those, 45 (17.8%) had at least one procedure HAE-related hospital admission, and 128 (50.6%) had at least one HAE-related hospital admission. The mean (SD) hospitalization length of stay was 5 (8) days. Over 14% (n = 36) of HAE patients with attack (n = 253) had at least one HAE-related ICU admission.
ConclusionThis database study is the strategy used to allow us to find and describe the characteristics of patients with HAE who use danazol for long-term prophylaxis in the SUS and identify HCRU outcomes of interest such as hospitalizations, inpatient, and outpatient settings. The high rate of attacks, hospitalizations, and general resource uses highlights the necessity to increase awareness of new strategies and accurate approaches to treat HAE patients. Therefore, our findings are important indicators that our health system and guidelines need to be revised and improved to properly diagnose, treat, an

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.3389/fmed.2024.1343547.s001（source: https://frontiersin.figshare.com/articles/dataset/Data_Sheet_1_A_real-world_study_of_hereditary_angioedema_patients_due_to_C1_inhibitor_deficiency_treated_with_danazol_in_the_Brazilian_Public_Health_System_docx/26955994）。