scholarly journals Merging Genomics Public Datasets with Clinical Cancer Registry Data – Lessons Learned

Author(s):  
Lorena Schall ◽  
Sylvia Bochum ◽  
Monika Pobiruchin

Publicly available datasets – for example via cBioPortal for Cancer Genomics – could be a valuable source for benchmarks and comparisons with local patient records. However, such an approach is only valid if patient cohorts are comparable to each other and if the documentation is complete and sufficient. In this paper, records from exocrine pancreatic cancer patients documented in a local cancer registry are compared with two public datasets to calculate overall survival. Several data preprocessing steps were necessary to ensure comparability of the different datasets and a common database schema was created. Our assumption that the public datasets could be used to augment the data of the local cancer registry could not be validated, since the analysis on overall survival showed a significant difference. We discuss several reasons and explanations for this finding. So far, comparing different datasets with each other and drawing medical conclusions on such comparisons should be conducted with great caution.

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii322-iii322
Author(s):  
David Noyd ◽  
Claire Howell ◽  
Kevin Oeffinger ◽  
Daniel Landi ◽  
Kristin Schroeder

Abstract BACKGROUND Pediatric neuro-oncology (PNO) survivors suffer long-term physical and neurocognitive morbidity. Comprehensive care addressing late effects of brain tumors and treatment in these patients is important. Clinical guidelines offer a framework for evaluating late effects, yet lack of extended follow-up is a significant barrier. The electronic health record (EHR) allows novel and impactful opportunities to construct, maintain, and leverage survivorship cohorts for health care delivery and as a platform for research. METHODS This survivorship cohort includes all PNO cases ≤18-years-old reported to the state-mandated cancer registry by our institution. Data mining of the EHR for exposures, demographic, and clinical data identified patients with lack of extended follow-up (>1000 days since last visit). Explanatory variables included age, race/ethnicity, and language. Primary outcome included date of last clinic visit. RESULTS Between January 1, 2013 and December 31, 2018, there were 324 PNO patients reported to our institutional registry with ongoing analysis to identify the specific survivorship cohort. Thirty patients died with an overall mortality of 9.3%. Two-hundred-and-sixteen patients were seen in PNO clinic, of which 18.5%% (n=40) did not receive extended follow-up. Patients without extended follow-up were an average of 3.5 years older up (p<0.01); however, there was no significant difference in preferred language (p=0.97) or race/ethnicity (p=0.57). CONCLUSION Integration of EHR and cancer registry data represents a feasible, timely, and novel approach to construct a PNO survivorship cohort to identify and re-engage patients without extended follow-up. Future applications include analysis of exposures and complications during therapy on late effects outcomes.


2014 ◽  
Vol 17 (7) ◽  
pp. A733
Author(s):  
H Xiao ◽  
F Tan ◽  
G Adunlin ◽  
AA Ali ◽  
P Goovaerts ◽  
...  

Author(s):  
Andrijono ◽  
Heru Prasetyo ◽  
Eka R Gunardi ◽  
Gatot Purwoto ◽  
Hariyono Winarto

Objective: To determine whether thrombocytosis is a prognostic factor for epithelial ovarian cancer and its relationship with 3-year overall survival in epithelial ovarian cancer patients.Methods: This study is a retrospective cohort study using medical record of patients with epithelial ovarian cancer registered in cancer registry of Oncology Division in Obstetrics and Gynecology Department, Dr. Cipto Mangunkusumo National General Hospital from January 2014 - July 2016. Data were collected when subjects were first until diseases outcomes identified in 3 years.Results: : Out of 220 subjects, 132 (60%) were patients with advanced stage epithelial ovarian cancer (stage II/III/IV). 94 (42.7%) subjects had thrombocytosis. Patients with advanced stage of disease had higher risk of having thrombocytosis than the ones with earlier stage (p=0.005; OR=2.329). Correlation between thrombocytosis and 3-year overall survival was known to be insignificant (p=0.555). There was shorter mean time survival between patients with thrombocytosis and the ones without but the there was no significant difference in hazard ratio between the two groups (p  = 0.399).Conclusion :Thrombocytosis is not a prognostic factor in patients with epithelial ovarian cancer. There is also no significant difference of 3-year overall survival between patients with or without thrombocytosis.Keywords: epithelial ovarian carcinoma, prognosis,  thrombocytosis.   Abstrak Tujuan: Membuktikan bahwa trombositosis sebagai faktor prognosis kesintasan pada pasien kanker ovarium jenis epitelial dan hubungannya terhadap kesintasan 3 tahun pasien kanker ovarium  jenis epitelial.Metode: Penelitian ini merupakan studi kohort retrospektif menggunakan data rekam medis pasien kanker ovarium epitelial yang terdaftar pada cancer registry Departemen Obstetri dan Ginekologi Divisi Onkologi Rumah Sakit Cipto Mangunkusumo pada tahun Januari 2014-Juli 2016. Pengamatan dilakukan saat subjek pertama kali didiagnosis akhir pengamatan selama 3 tahun.Hasil: Didapatkan 220 subjek penelitian yang merupakan populasi terjangkau dan memenuhi kriteria inklusi dan eksklusi. Dari 220 subjek penelitian, 132 (60%) dari 220 subjek penelitian merupakan pasien dengan kanker ovarium stadium lanjut (Stadium II/III/IV). Trombositosis didapatkan pada 94 orang subjek penelitian (42,7%). Pasien dengan kanker stadium lanjut memiliki risiko trombositosis yang lebih tinggi dibandingkan subjek pada stadium awal (p=0,005;OR=2,329). Trombositosis secara statistik tidak bermakna pada kesintasan 3 tahun (p=0,555). Terdapat mean time survival yang lebih rendah pada pasien dengan trombositosis tetapi tidak ada perbedaan hazard ratio yang bermakna antara subjek dengan atau tanpa trombositosis (p=0,399).Kesimpulan : Trombositosis bukan merupakan faktor prognostik pada pasien kanker ovarium jenis epitelial dan tidak terdapat hubungan antara trombositosis dan 3 tahun pada pasien dengan kanker ovarium jenis epithelial.Kata kunci: karsinoma ovarium epithelial,  prognosis, trombositosis


2020 ◽  
Vol 2 (CSI) ◽  
pp. 12-18
Author(s):  
Ali Al-Rubaye ◽  
Dhurgham Abdulwahid ◽  
Aymen Albadran ◽  
Abbas Ejbary ◽  
Laith Alrubaiy

Background: There has been a rapid rise in cases of COVID-19 infection and its mortality rate since the first case reported in February 2020. This led to the rampant dissemination of misinformation and rumors about the disease among the public. Objectives: To investigate the scale of public misinformation about COVID-19 in Basrah, Iraq. Methods: A cross-sectional study based on a 22-item questionnaire to assess public knowledge and understanding of information related to the COVID-19 infection. Results: A total of 483 individuals completed the questionnaire. The most frequent age group was 26–35 years (28.2%); there were 280 (58%) males and 203 (42%) females. Of the participants, 282 (58.4%) were with an education level below the Bachelor’s degree, 342 (70.8%) were married, and 311 (64%) were living in districts in Basra other than the central district. Overall, 50.8% (11.8/ 22 * 100%) of individuals had the correct information regarding COVID-19. There was a significant association between the level of COVID-19 related misinformation and participants’ educational levels and occupation (p <0.05). However, there was no significant difference found across sex, age group, marital state, and area of residence. Conclusions: Misinformation related to COVID-19 is widely spread and has to be addressed in order to control the pandemic. Keywords: COVID-19, misinformation, knowledge, Iraq


Author(s):  
Li Lian Kuan ◽  
Ashley R. Dennison ◽  
Giuseppe Garcea

Abstract Background The clinical significance of indeterminate pulmonary nodules (IPN) in patients with resectable pancreatic adenocarcinoma (PDAC) is unknown. The rate of detection on IPN has risen due to enhanced staging investigations to determine resectability. IPNs detected on preoperative imaging represent a clinical dilemma and complicate decision-making. Currently, there are no recommendations on the management of IPN. This review provides a comprehensive overview of the current knowledge on the natural history of IPN detected among patients with resectable PDAC. Methods A systematic review based on a search in Medline and Embase databases was performed. All clinical studies evaluating the significance of IPN in patients with resectable PDAC were included. PRISMA guidelines were followed. Results Five studies met the inclusion criteria. The total patient population was 761. The prevalence of IPN reported ranged from 18 to 71%. The median follow-up duration was 17 months. The median overall survival was 19 months. Patients with pre-operative IPN which subsequently progressed to clinically recognizable pulmonary metastases, ranged from 1.5 to 16%. Four studies found that there was no significant difference in median overall survival in patients with or without IPNs. Conclusion This is a first review on the significance of IPN in patients with resectable PDAC. The preoperative presence of IPN does not demonstrate an association with overall survival after surgery. The identification of IPN is a significant finding however it should not preclude patients with resectable PDAC from undergoing curative resection.


2021 ◽  
Vol 8 ◽  
pp. 204993612110365
Author(s):  
Kundan Mishra ◽  
Suman Kumar ◽  
Sandeep Ninawe ◽  
Rajat Bahl ◽  
Ashok Meshram ◽  
...  

Introduction: Acute myeloid leukemia (AML) is the commonest leukemia in adults. Mortality in thew first 30-days ranges from 6% to 43%, while infections account for 30–66% of early deaths. We aim to present our experience of infections in newly-diagnosed AML. Method: This prospective, observational study, was undertaken at a tertiary care hospital in Northern India. Patients with confirmed AML (bone marrow morphology and flow cytometry) and who had developed febrile neutropenia (FN), were included. Result: A total of fifty-five patients were included in the study. The median age of the patients was 47.1 years (12–71) and 28 (50.9%) were males. Fever (33, 60%) was the commonest presentation at the time of diagnosis. One or more comorbid conditions were present in 20 patients (36.36%). Infection at presentation was detected in 17 patients (30.9%). The mean duration to develop febrile neutropenia since the start of therapy was 11.24 days. With each ten-thousand increase in white blood cell (WBC) count, the mean number of days of FN development decreased by 0.35 days ( p = 0.029). Clinical and/or radiological localization was possible in 23 patients (41.81%). Thirty-four blood samples (34/242, 14.04%) from 26 patients (26/55, 47.3%) isolated one or more organisms. Gram negative bacilli (GNB) were isolated in 24 (70.58%) samples. Burkholderia cepacia (8/34, 23.52%) was the commonest organism. The number of days required to develop febrile neutropenia was inversely associated with overall survival (OS). However, when compared, there was no statistically significant difference in OS between patients developing fever on day-10 and day-25 ( p = 0.063). Thirteen patients (23.63%) died during the study period. Discussion: Low percentage of blood culture positivity and high incidence of MDR organisms are a matter of concern. Days to develop febrile neutropenia were inversely associated with overall survival (OS), emphasizing the importance of preventive measures against infections. Conclusion: Infections continues to be a major cause of morbidity and mortality among AML patients.


2021 ◽  
pp. 026732312110283
Author(s):  
Judith Simon ◽  
Gernot Rieder

Ever since the outbreak of the COVID-19 pandemic, questions of whom or what to trust have become paramount. This article examines the public debates surrounding the initial development of the German Corona-Warn-App in 2020 as a case study to analyse such questions at the intersection of trust and trustworthiness in technology development, design and oversight. Providing some insights into the nature and dynamics of trust and trustworthiness, we argue that (a) trust is only desirable and justified if placed well, that is, if directed at those being trustworthy; that (b) trust and trustworthiness come in degrees and have both epistemic and moral components; and that (c) such a normatively demanding understanding of trust excludes technologies as proper objects of trust and requires that trust is directed at socio-technical assemblages consisting of both humans and artefacts. We conclude with some lessons learned from our case study, highlighting the epistemic and moral demands for trustworthy technology development as well as for public debates about such technologies, which ultimately requires attributing epistemic and moral duties to all actors involved.


Author(s):  
Claudius E. Degro ◽  
Richard Strozynski ◽  
Florian N. Loch ◽  
Christian Schineis ◽  
Fiona Speichinger ◽  
...  

Abstract Purpose Colorectal cancer revealed over the last decades a remarkable shift with an increasing proportion of a right- compared to a left-sided tumor location. In the current study, we aimed to disclose clinicopathological differences between right- and left-sided colon cancer (rCC and lCC) with respect to mortality and outcome predictors. Methods In total, 417 patients with colon cancer stage I–IV were analyzed in the present retrospective single-center study. Survival rates were assessed using the Kaplan–Meier method and uni/multivariate analyses were performed with a Cox proportional hazards regression model. Results Our study showed no significant difference of the overall survival between rCC and lCC stage I–IV (p = 0.354). Multivariate analysis revealed in the rCC cohort the worst outcome for ASA (American Society of Anesthesiologists) score IV patients (hazard ratio [HR]: 16.0; CI 95%: 2.1–123.5), CEA (carcinoembryonic antigen) blood level > 100 µg/l (HR: 3.3; CI 95%: 1.2–9.0), increased lymph node ratio of 0.6–1.0 (HR: 5.3; CI 95%: 1.7–16.1), and grade 4 tumors (G4) (HR: 120.6; CI 95%: 6.7–2179.6) whereas in the lCC population, ASA score IV (HR: 8.9; CI 95%: 0.9–91.9), CEA blood level 20.1–100 µg/l (HR: 5.4; CI 95%: 2.4–12.4), conversion to laparotomy (HR: 14.1; CI 95%: 4.0–49.0), and severe surgical complications (Clavien-Dindo III–IV) (HR: 2.9; CI 95%: 1.5–5.5) were identified as predictors of a diminished overall survival. Conclusion Laterality disclosed no significant effect on the overall prognosis of colon cancer patients. However, group differences and distinct survival predictors could be identified in rCC and lCC patients.


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