Saudi Cerebral Palsy Register (SCPR): Protocol on the Methods and Technical Details.

IF 3.8 4区 医学 Q1 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Journal of Epidemiology and Global Health Pub Date : 2024-06-01 Epub Date: 2024-02-15 DOI:10.1007/s44197-024-00198-5
Sami Mukhdari Mushta, Riyad Alghamdi, Hani Almalki, Saadia Waqas, Adel Alawwadh, Osamah Barasheed, Mohammad Garnan, Sarah McIntyre, Harunor Rashid, Nadia Badawi, Gulam Khandaker
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Abstract

This protocol presents a comprehensive proposal for the establishment of the Saudi Cerebral Palsy Register (SCPR), a crucial project for investigating and addressing the prevalence, etiology, and management of cerebral palsy (CP) in Saudi Arabia. The SCPR will not only provide a robust database for ongoing research and analysis but will also serve as a platform for investigating the causes of CP, implementing preventative strategies, and improving the quality of care and outcomes for people with CP and their families in Saudi Arabia. Detailed case definitions, inclusion/exclusion criteria, and data collection protocols are discussed to ensure the integrity and comparability of the data. The plan also outlines strategic funding, institutional and government endorsement, sustainability considerations, potential challenges and proposed solutions, and expected outcomes and impact. These include creating research and educational opportunities, fostering regional and international collaborations, and significantly contributing to CP prevention strategies. Overcoming anticipated obstacles, such as stigma, institutional policies, and collaborations, and securing both necessary funding and endorsements are highlighted as critical for the success of the SCPR. The project is not only aligned with promote prevention of health risks, a target of Vision 2030 in Saudi Arabia, but is also expected to have a substantial impact on the health and quality of life of people with CP and their families in Saudi Arabia, serving as inspiration for similar efforts worldwide.

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沙特脑瘫登记册(SCPR):方法和技术细节协议》。
本协议提出了建立沙特脑瘫登记册(SCPR)的综合建议,该登记册是调查和解决沙特阿拉伯脑瘫(CP)患病率、病因和管理问题的重要项目。SCPR 不仅将为正在进行的研究和分析提供一个强大的数据库,还将作为一个平台,用于调查 CP 的病因、实施预防策略以及提高沙特阿拉伯 CP 患者及其家庭的护理质量和效果。该计划讨论了详细的病例定义、纳入/排除标准和数据收集协议,以确保数据的完整性和可比性。该计划还概述了战略资金、机构和政府认可、可持续性考虑、潜在挑战和拟议解决方案以及预期成果和影响。其中包括创造研究和教育机会、促进地区和国际合作,以及为 CP 预防战略做出重大贡献。克服污名化、机构政策和合作等预期障碍,以及获得必要的资金和支持,是 SCPR 取得成功的关键。该项目不仅符合沙特阿拉伯《2030 年远景规划》的目标--促进健康风险的预防,而且有望对沙特阿拉伯的 CP 患者及其家庭的健康和生活质量产生重大影响,并对全球的类似努力起到激励作用。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
10.70
自引率
1.40%
发文量
57
审稿时长
19 weeks
期刊介绍: The Journal of Epidemiology and Global Health is an esteemed international publication, offering a platform for peer-reviewed articles that drive advancements in global epidemiology and international health. Our mission is to shape global health policy by showcasing cutting-edge scholarship and innovative strategies.
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