Knowlegde Institute of the Dutch Association of Medical Specialists, Utrecht, The Netherlands.
Cochrane Netherlands, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
Orphanet J Rare Dis. 2024 Oct 2;19(1):364. doi: 10.1186/s13023-024-03356-x.
We aim to illustrate the role of complete and transparent reporting coupled with access to data sourced from published systematic reviews, especially assisting in the identification of evidence for subgroups within the context of a rare disease. To accomplish this principle, we provide a real-world example encountered during the revision of the Dutch clinical practice guideline for hepatocellular carcinoma. Specifically, we retrieved insights from two Cochrane reviews to identify direct evidence concerning the diagnostic test accuracy of computed tomography and magnetic resonance imaging for detecting hepatocellular carcinomas in suspected patients without liver cirrhosis. Through reusing the Cochrane review authors' efforts already undertaken in their exhaustive literature search and selection, we successfully identified relevant direct evidence for this subgroup of suspected patients without cirrhosis and performed an evidence synthesis within the constraints of limited resources for the guideline revision. This approach holds the potential for replication in other subgroups in the context of rare diseases, contingent on the transparent and complete reporting of systematic reviews, as well as the availability and accessibility of their extracted data. Consequently, we underscore the importance of adhering to established reporting guidelines for systematic reviews, while simultaneously advocating for increased availability and accessibility to data. Such practices would not only increase the transparency and reproducibility of systematic reviews but could also increase reusability of their data. In turn, the increased reusability could result in reduced resource utilization in other sectors such as the guideline developing community as we show in our example.
我们旨在阐明完整透明的报告以及获取源自已发表系统评价的数据的作用，特别是在罕见病背景下，这有助于确定亚组的证据。为了实现这一原则，我们提供了在修订荷兰肝细胞癌临床实践指南时遇到的一个真实示例。具体来说，我们从两项 Cochrane 综述中获取了有关计算机断层扫描和磁共振成像在疑似无肝硬化患者中检测肝细胞癌的诊断测试准确性的直接证据。通过重复利用 Cochrane 综述作者在全面文献检索和选择中所做的努力，我们成功地为这个无肝硬化疑似患者亚组找到了相关的直接证据，并在指南修订的有限资源范围内进行了证据综合。这种方法有可能在罕见病背景下的其他亚组中复制，前提是系统评价的报告透明完整，并且其提取的数据可用且可访问。因此，我们强调了坚持系统评价既定报告指南的重要性，同时倡导增加数据的可用性和可访问性。这种做法不仅可以提高系统评价的透明度和可重复性，还可以增加其数据的可重用性。反过来，如我们的示例所示，数据的可重用性增加可能会导致其他领域（如指南制定社区）的资源利用减少。
