为遗传性出血性疾病的社区生成国家研究蓝图奠定基础：通过基础设施、劳动力、资源和资金促进研究

数据集获取（Figshare）

• 源站标题：Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding
• DOI：10.6084/m9.figshare.22277833.v1
• 发布日期：2023-03-15
• 文件数：5 个
• 文件总体积：134.39 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/Building_the_foundation_for_a_community-generated_national_research_blueprint_for_inherited_bleeding_disorders_facilitating_research_through_infrastructure_workforce_resources_and_funding/22277833

命令行下载

curl -L -o "NEW Suppl Tables S5 WG6 SOSRS Facilitating Research.xlsx" "https://ndownloader.figshare.com/files/39620176"
curl -L -o "Suppl Table S1 WG6 SOSRS Faciltating Research.docx" "https://ndownloader.figshare.com/files/39620179"
curl -L -o "Suppl Tables S2 WG6 SOSRS Facilitating Research.xlsx" "https://ndownloader.figshare.com/files/39620182"
curl -L -o "Suppl Tables S3 WG6 SOSRS Facilitating Research.xlsx" "https://ndownloader.figshare.com/files/39620185"
curl -L -o "Suppl Tables S4 WG6 SOSRS Facilitating Research.xlsx" "https://ndownloader.figshare.com/files/39620188"

文件清单

• NEW Suppl Tables S5 WG6 SOSRS Facilitating Research.xlsx（33.18 KB）
• Suppl Table S1 WG6 SOSRS Faciltating Research.docx（31.05 KB）
• Suppl Tables S2 WG6 SOSRS Facilitating Research.xlsx（20.68 KB）
• Suppl Tables S3 WG6 SOSRS Facilitating Research.xlsx（28.56 KB）
• Suppl Tables S4 WG6 SOSRS Facilitating Research.xlsx（20.92 KB）

文件总体积 134.39 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

The National Hemophilia Foundation (NHF) conducted extensive, inclusive community consultations to guide prioritization of research in coming decades in alignment with its mission to find cures and address and prevent complications enabling people and families with blood disorders to thrive.
With the American Thrombosis and Hemostasis Network, NHF recruited multidisciplinary expert working groups (WG) to distill the community-identified priorities into concrete research questions and score their feasibility, impact, and risk. WG6 was charged with identifying the infrastructure, workforce development, and funding and resources to facilitate the prioritized research. Community input on conclusions was gathered at the NHF State of the Science Research Summit.
WG6 detailed a minimal research capacity infrastructure threshold, and opportunities to enable its attainment, for bleeding disorders centers to participate in prospective, multicenter national registries. They identified challenges and opportunities to recruit, retain, and train the diverse multidisciplinary care and research workforce required into the future. Innovative collaborative approaches to trial design, resource networking, and funding to surmount obstacles facing research in rare disorders were elucidated.
The innovations in infrastructure, workforce development, and resources and funding proposed herein may contribute to facilitating a National Research Blueprint for Inherited Bleeding Disorders.
Research is critical to advancing the diagnosis and care of people with inherited bleeding disorders (PWIBD). This research requires significant infrastructure, including people and resources. Hemophilia treatment centers (HTC) need many different skilled care professionals including doctors, nurses, and other providers; also statisticians, data managers, and other experts to process patients’ clinical information into research. Attracting diverse qualified professionals to the clinical and research work requires long-term planning, recruiting individuals in training programs and retaining them as they become experts. Research infrastructure includes physical servers running database software, network

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.22277833.v1（source: https://tandf.figshare.com/articles/dataset/Building_the_foundation_for_a_community-generated_national_research_blueprint_for_inherited_bleeding_disorders_facilitating_research_through_infrastructure_workforce_resources_and_funding/22277833）。