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Review
. 2023 Mar 21;8(1):1-9.
doi: 10.1515/pp-2022-0200. eCollection 2023 Mar.

Determining a minimum data set for reporting clinical and radiologic data for pseudomyxoma peritonei

Thale D J H Patrick-Brown  1 , Faheez Mohamed  2 , Andrew Thrower  3 , Annette Torgunrud  1 , Sarah Cosyns  4   5 , Emel Canbay  6 , Laurent Villeneuve  7   8 , Kjersti Flatmark  1   9   10 , Andreas Brandl  11
Affiliations
Review

Determining a minimum data set for reporting clinical and radiologic data for pseudomyxoma peritonei

Thale D J H Patrick-Brown et al. Pleura Peritoneum. .

Abstract

Objectives: 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.

Content: A review of articles from PubMed, CenterWatch, ClinicalTrials.gov and MedRxiv was undertaken, and clinical trials reporting PMP results selected.

Summary: 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.

Outlook: 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.

Keywords: biobanking; data science; investigative techniques; neoplasm; peritoneum; pseudomyxoma peritonei.

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Conflict of interest statement

Competing interests: Authors state no conflict of interest.

Figures

Figure 1:
Figure 1:
Flowchart showing the application of the search criteria and the reasons studies were excluded.
Figure 2:
Figure 2:
Reported clinical and treatment parameters; x-axis: ratio of reported to unreported, y-axis: marker recorded (A: basic clinical parameters and biomarkers, B: treatment parameters, C: morbidity and mortality and survival parameters, D: pathological parameters). Abbreviations: see Table 1.
Figure 3:
Figure 3:
Clinical data reported (red – not reported; green – reported) [–57]. Abbreviations: see Table 1.
See this image and copyright information in PMC

References

    1. Patrick-Brown T, Carr N, Swanson D, Larsen S, Mohamed F, Flatmark K. Estimating the prevalence of pseudomyxoma peritonei in Europe using a novel statistical method. Ann Surg Oncol. 2020;28:252–7. doi: 10.1245/s10434-020-08655-8. - DOI - PMC - PubMed
    1. Sørensen O, Flatmark K, Reed W, Wiig J, Dueland S, Giercksky K-E, et al. Evaluation of complete cytoreductive surgery and two intraperitoneal chemotherapy techniques in pseudomyxoma peritonei. Eur J Surg Oncol. 2012;38:969–76. doi: 10.1016/j.ejso.2012.06.552. - DOI - PubMed
    1. Yan T, Bijelic L, Sugarbaker P. Critical analysis of treatment failure after complete cytoreductive surgery and perioperative intraperitoneal chemotherapy for peritoneal dissemination from appendiceal mucinous neoplasms. Gastrointest Oncol. 2007;14:2289–99. doi: 10.1245/s10434-007-9462-0. - DOI - PubMed
    1. Youssef H, Newman C, Chandrakumaran K, Mohamed F, Cecil T, Moran B. Operative findings, early complications, and long-term survival in 456 patients with pseudomyxoma peritonei syndrome of appendiceal origin. Dis Colon Rectum. 2011;54:293–9. doi: 10.1007/dcr.0b013e318202f026. - DOI - PubMed
    1. Carr N, Cecil T, Mohamed F, Sobin L, Sugarbaker P, González-Moreno S, et al. A consensus for classification and pathologic reporting of pseudomyxoma peritonei and associated appendiceal neoplasm. Am J Surg Pathol. 2016;40:14–26. doi: 10.1097/PAS.0000000000000535. - DOI - PubMed