从罕见疾病注册和分析平台框架中吸取教训,为印度开发国家罕见疾病注册的框架
Pragya Chaube1, Avani Lankapalli, Mohua Chakraborty Choudhury
1DST Center for Policy Research, Indian Institute of Science, Bengaluru, India.
Journal of biosciences
|February 22, 2024
概括
在印度开发国家罕见病 (RD) 注册表面临着社会和技术上的障碍. 来自亚太经济合作区 (APEC) 的见解,特别是RD-RAP框架,为其创建和成功提供了宝贵的指导.
科学领域:
- 公共卫生 公共卫生
- 医疗信息学 医疗信息学
- 基因组学就是基因组学.
背景情况:
- 罕见疾病 (RDs) 构成了全球医疗保健的挑战,需要强大的数据基础设施.
- 疾病登记册对于推进研发和开发研究,诊断和治疗策略至关重要.
- 印度需要一个专门的国家注册表,以满足其罕见疾病人口的特定需求.
研究的目的:
- 探索为印度开发一个全面的国家罕见疾病注册表.
- 识别和解决建立这样一个注册的社会和技术挑战.
- 评估RD-RAP框架在印度环境中的适用性.
主要方法:
- 与印度和亚太经济合作组织 (APEC) 地区的专家进行商.
- 分析注册表开发中的社会和技术挑战.
- 评估RD-RAP (注册和分析平台) 框架的功能和实用性.
- 审查利益相关者的角色和责任.
主要成果:
- 确定了印度国家研发和开发注册局面的关键社会和技术挑战.
- 基于分析的模型RD-RAP框架显示了印度环境的巨大潜力.
- 利益相关者的参与和定义的责任对于注册表的成功至关重要.
- 特别强调了与印度相关的RD-RAP特征.
结论:
- 印度的国家罕见病注册是可行的,也是必要的.
- 调整RD-RAP框架可以为印度的注册提供一个坚实的基础.
- 解决已确定的挑战和利用多方利益相关者合作对于有效实施至关重要.
相关概念视频
Principles of Disease Surveillance
96
Disease surveillance is the systematic collection, analysis, and interpretation of health data essential to the planning, implementation, and evaluation of public health practice. This process integrates data dissemination to entities responsible for preventing and controlling disease, injury, and disability. Surveillance systems provide crucial information for action, helping public health authorities make informed decisions to manage and prevent outbreaks, ensure public safety, optimize...
96
Issues And Trends In Healthcare Delivery System
5.6K
The issues and trends in healthcare delivery are constantly changing. The COVID-19 pandemic is one recent issue that wreaked havoc on healthcare systems, causing a shortage of healthcare workers, high demand for medicines and supplies, and increased medical expenditure due to a lack of insurance. Other issues include rising healthcare costs and care fragmentation.
Cost Containment
Payment for healthcare services has historically promoted adoption of costly and often unnecessary or inefficient...
Cost Containment
Payment for healthcare services has historically promoted adoption of costly and often unnecessary or inefficient...
5.6K
Statistical Software for Data Analysis and Clinical Trials
550
Statistical software is pivotal in data analysis and clinical trials by providing tools to analyze data, draw conclusions, and make predictions. These software packages range from simple data management applications to complex analytical platforms, supporting various statistical tests, models, and simulation techniques. Their significance lies in their ability to handle vast amounts of data with precision and efficiency, enabling researchers to validate hypotheses, identify trends, and make...
550
Steps in Outbreak Investigation
128
In the ever-evolving field of public health, statistical analysis serves as a cornerstone for understanding and managing disease outbreaks. By leveraging various statistical tools, health professionals can predict potential outbreaks, analyze ongoing situations, and devise effective responses to mitigate impact. For that to happen, there are a few possible stages of the analysis:
128
Purpose of Health Records I
1.2K
The vital purpose of health records is to provide a complete and accurate account of a patient's medical history, including communication, diagnostic and therapeutic orders, care planning, research, and quality review.
Here's a breakdown of how health records serve these purposes:
Here's a breakdown of how health records serve these purposes:
1.2K
Health Information Technology and Healthcare Information System
840
Health Information Technology (HIT)
Health Information Technology, commonly called HIT, integrates advanced information systems and technology in healthcare settings. Its primary functions include:
Health Information Technology, commonly called HIT, integrates advanced information systems and technology in healthcare settings. Its primary functions include:
840


