Patrick-Brown Thale D J H, Mohamed Faheez, Thrower Andrew, Torgunrud Annette, Cosyns Sarah, Canbay Emel, Villeneuve Laurent, Flatmark Kjersti, Brandl Andreas
Department of Tumour Biology, The Norwegian Radium Hospital, Oslo University Hospital, Oslo, Norway.
Peritoneal Malignancy Institute, Basingstoke Hospital, Basingstoke, UK.
Pleura Peritoneum. 2023 Mar 21;8(1):1-9. doi: 10.1515/pp-2022-0200. eCollection 2023 Mar.
Pseudomyxoma peritonei (PMP) is a rare cancer currently affecting over 11,736 patients across Europe. Since PMP is so uncommon, collaboration between scientific centers is key to discovering the mechanisms behind the disease, efficient treatments, and targets pointing to a cure. To date, no consensus has been reached on the minimum data that should be collected during PMP research studies. This issue has become more important as biobanking becomes the norm. This paper begins the discussion around a minimum data set that should be collected by researchers through a review of available clinical trial reports in order to facilitate collaborative efforts within the PMP research community.
A review of articles from PubMed, CenterWatch, ClinicalTrials.gov and MedRxiv was undertaken, and clinical trials reporting PMP results selected.
There is a core set of data that researchers report, including age and sex, overall survival, peritoneal cancer index (PCI) score, and completeness of cytoreduction, but after this, reports become variable.
Since PMP is a rare disease, it is important that reports include as large of a number of standardised data points as possible. Our research indicates that there is still much ground to cover before this becomes a reality.
腹膜假黏液瘤（PMP）是一种罕见癌症，目前在欧洲影响着超过11,736名患者。由于PMP非常罕见，科学中心之间的合作是发现该疾病背后机制、有效治疗方法以及指向治愈的靶点的关键。迄今为止，关于PMP研究中应收集的最低数据尚未达成共识。随着生物样本库成为常态，这个问题变得更加重要。本文通过回顾现有的临床试验报告，开启了围绕研究人员应收集的最低数据集的讨论，以促进PMP研究界的合作。
对来自PubMed、CenterWatch、ClinicalTrials.gov和MedRxiv的文章进行了回顾，并选择了报告PMP结果的临床试验。
研究人员报告的有一组核心数据，包括年龄和性别、总生存期、腹膜癌指数（PCI）评分以及肿瘤细胞减灭的完整性，但在此之后，报告变得各不相同。
由于PMP是一种罕见疾病，报告中包含尽可能多的标准化数据点非常重要。我们的研究表明，在这成为现实之前，仍有很多工作要做。
