Sickle cell disease (SCD) is one of the most common blood disorders impacting planetary health. Over 300,000 newborns are diagnosed with SCD each year globally, with an increasing trend. The sickle cell disease ontology (SCDO) is the most comprehensive multidisciplinary SCD knowledge portal. The SCDO was collaboratively developed by the SCDO working group, which includes experts in SCD and data standards from across the globe. This expert review presents highlights and lessons learned from the fourth SCDO workshop that marked the beginning of applications toward planetary health impact, and with an eye to empower and cultivate multisite SCD collaborative research. The workshop was organized by the Sickle Africa Data Coordinating Center (SADaCC) and attended by 44 participants from 14 countries, with 2 participants connecting remotely. Notably, from the standpoint of democratizing and innovating scientific meeting design, an SCD patient advocate also presented at the workshop, giving a broader real-life perspective on patients' aspirations, needs, and challenges. A major component of the workshop was new approaches to harness SCDO to harmonize data elements used by different studies. This was facilitated by a web-based platform onto which participants uploaded data elements from previous or ongoing SCD-relevant research studies before the workshop, making multisite collaborative research studies based on existing SCD data possible, including multisite cohort, SCD global clinical trials, and SCD community engagement approaches. Trainees presented proposals for systematic literature reviews in key SCD research areas. This expert review emphasizes potential and prospects of SCDO-enabled data standards and harmonization to facilitate large-scale global SCD collaborative initiatives. As the fields of public and global health continue to broaden toward planetary health, the SCDO is well poised to play a prominent role to decipher SCD pathophysiology further, and co-design diagnostics and therapeutics innovation in the field.

中文翻译：

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镰状细胞疾病本体论：支持新行星健康应用的合作研究和共同设计

镰状细胞病 (SCD) 是影响地球健康的最常见的血液疾病之一。全球每年有超过 300,000 名新生儿被诊断出患有 SCD，并且呈上升趋势。镰状细胞疾病本体 (SCDO) 是最全面的多学科 SCD 知识门户。SCDO 由 SCDO 工作组合作开发，该工作组包括来自全球的 SCD 和数据标准专家。这篇专家评论介绍了第四次 SCDO 研讨会的亮点和经验教训，这标志着应用对行星健康影响的开始，并着眼于授权和培养多站点 SCD 协作研究。该研讨会由镰状非洲数据协调中心 (SADaCC) 组织，有来自 14 个国家的 44 名参与者参加，其中 2 名参与者远程连接。尤其，从科学会议设计的民主化和创新的角度来看，一位 SCD 患者倡导者也在研讨会上发表了演讲，就患者的愿望、需求和挑战提供了更广泛的现实视角。研讨会的一个主要组成部分是利用 SCDO 协调不同研究使用的数据元素的新方法。这得益于一个基于网络的平台，参与者在研讨会之前将之前或正在进行的 SCD 相关研究的数据元素上传到该平台上，从而使基于现有 SCD 数据的多站点协作研究成为可能，包括多站点队列、SCD 全球临床试验和SCD 社区参与方法。受训人员提出了对 SCD 关键研究领域的系统文献综述的建议。该专家审查强调了支持 SCDO 的数据标准和协调的潜力和前景，以促进大规模的全球 SCD 协作计划。随着公共卫生和全球健康领域不断向地球健康方向扩展，SCDO 准备好在进一步解读 SCD 病理生理学方面发挥重要作用，并在该领域协同设计诊断和治疗创新。