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Borealis
Wiens, Matthew O; Kenya-Mugisha, Nathan; Namala, Angella; Tagoola, Abner; Bebell, Lisa; Pillay, Yashodani; Ansermino, J Mark; Kissoon, Niranjan; Payne, Beth A; Vidlern, Marianne; Christoffersen-Deb, Astrid; Lavoie, Pascal; Bone, Jeffrey 2023-05-15 <br /><strong>Dataset Description:</strong> This dataset contains materials from the Smart Discharges for Mom & Baby parent study within the <a href = "https://bcchr.ca/smart-discharges">Smart Discharges</a> program of research. Materials include the parent study ethics protocol and associated documents. See the Metadata section below for links to related publications and datasets.<br /> <br /><strong>Background:</strong> In low-income country settings, the first six weeks after birth remain a critical period of vulnerability for both mother and newborn. Despite recommendations for routine post-discharge follow-up, few mothers and newborns receive guideline recommended care during this period. Prediction modelling of post-delivery outcomes has the potential to improve outcomes for both mother and newborn by identifying high-risk dyads, improving risk communication, and facilitating a patient-centered approach to postnatal care. <br /> <br /><strong>Methods:</strong> This is a mixed-methods study to explore and map the current postnatal discharge processes in Uganda.We will conduct an observational cohort study (Phase I) to develop and internally validate our risk score and aim to recruit 7,000 mother and newborn dyads from Jinja Regional Referral Hospital and Mbarara Regional Referral Hospital. We will also engage with patients, families, and health workers through patient journey mapping and focus group discussions (Phases II-IV) to identify barriers and facilitators to inform the development of an evidence- and risk-based bundle of interventions to improve postnatal care (PNC) for dyads. <br /> <br />The primary outcome is maternal and/or neonatal death or need for re-admission within six weeks of birth. <br /> <br />Secondary outcomes include:<br /> 1. Post-natal care visits during the 6-week post-discharge period <br /> 2. Post-discharge health seeking practices for mothers/newborns during the 6-week post-discharge period<br /> 3. Causes of readmission/mortality among those who experience such outcomes, based on verbal autopsies and admission symptom/diagnosis questionnaires.<br /> <br /><strong>Data Collection Methods:</strong> All data will be collected at the point of care using encrypted study tablets. These data will be uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses will systematically collect data on clinical, social and demographic variables. Following discharge, field officers will contact mothers at 6-weeks post-discharge, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for participants who had died following discharge.<br /> <br /> Direct observation and interviews will be conducted on a sub-set of participants to collect process outcomes and barriers and facilitators to the patient's journey. FGDs will be digitally recorded, transcribed verbatim in the language spoken during the recording and analyzed for emerging themes. <br /> <br /><strong>Ethics Declaration:</strong> Ethics approvals have been obtained from the Makerere University School of Public Health (MakSPH) Institutional Review Board (SPH-2021-177), the Uganda National Council of Science and Technology (UNCST) in Uganda (HS2174ES) and the University of British Columbia in Canada (H21-03709). This study has been registered at clinicaltrials.gov (NCT05730387).<br /> <br /><strong>Associated datasets:</strong> <br /> Pending publication <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."
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Borealis
Kumbakumba, Elias; Kabakyenga, Jerome; Wiens, Matthew; Lavoie, Pascal; Businge, Stephen; Tagoola, Abner; Kenya Mugisha, Nathan; Ansermino, J Mark; Kissoon, Niranjan (Tex) 2021-03-30 Pulse oximetry dataset from Smart Discharges <6m observational study. May 2017 to March, 2020 (Thrasher - <6m - Phase 1) <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."
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Borealis
Kumbakumba, Elias; Kabakyenga, Jerome; Wiens, Matthew; Lavoie, Pascal; Businge, Stephen; Tagoola, Abner; Kenya Mugisha, Nathan; Ansermino, J Mark; Kissoon, Niranjan (Tex) 2021-04-20 Clinical outcome dataset #1 from Smart Discharges <6m observational study. May 2017 to March, 2020 (Thrasher - <6m - Phase 1). <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."
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Borealis
Wiens, Matthew; Kabakyenga, Jerome; Kumbakumba, Elias; Businge, Stephen; Kenya-Mugisha, Nathan; Larson, Charles P; Moschovis, Peter P; Singer, Joel; Lavoie, Pascal; Dumont, Guy AM; Ansermino, J Mark; Kissoon, Niranjan 2021-03-30 This data is a subset of the Smart Discharges Uganda Under 5 years parent study and is specific to the Phase I observational cohort of children aged 6-60 months containing <strong>pulse oximetry</strong> data.<br /> <br /><strong>Background:</strong> Substantial mortality occurs after hospital discharge in children under 5 years old with suspected sepsis. This study aimed to refine and externally validate a previously developed post-discharge mortality prediction model.<br /> <br /><strong>Methods:</strong> In this prospective observational cohort study, we recruited 6-60-month-old children admitted with suspected sepsis from the community to the paediatric wards of four Ugandan hospitals. The primary outcome was six-month post-discharge mortality among those discharged alive. <br /> <br /><strong>Data Collection Methods:</strong> All data were collected at the point of care using encrypted study tablets and these data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge.<br /> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679). This manuscript adheres to the guidelines for STrengthening the Reporting of OBservational studies in Epidemiology (STROBE). <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."
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Borealis
Wiens, Matthew; Kissoon, Niranjan (Tex); Ansermino, J Mark; Barigye, Celestine; Businge, Stephen; Kumbakumba, Elias; Larson, Charles; Moschovis, Peter; Singer, Joel; Lavoie, Pascal; Kabakyenga, Jerome 2023-04-20 <br /><strong>Dataset Description:</strong> This dataset contains materials from a parent study within the <a href = "https://bcchr.ca/smart-discharges">Smart Discharges</a> program of research. Materials include the parent study protocol and associated documents. See the Metadata section below for links to related publications and datasets.<br /> <br /><strong>Background:</strong> Substantial mortality occurs after hospital discharge in children under 5 years old with suspected sepsis. A better understanding of risk and ability to mitigate risk for those who are most vulnerable is needed to reduce child mortality in resource limited settings. <br /> <br /><strong>Methods:</strong> This is a prospective before-after study with staggered implementation at six Ugandan hospitals. Phase I is a prospective observational cohort study, while Phase II is a stepped-wedge intervention. The study also includes a long-term follow-up phase.<br /> <br />The ultimate outcome to be studied is post-discharge mortality for children < 5 years old by 6 months after admission. The study has two objectives, each corresponding to a phase: <ol><li><strong>Phase I:</strong> To refine and externally validate the existing post-discharge mortality prediction model.</li> <li><strong>Phase II: </strong> To determine the effectiveness of a Smart Discharge program on post-discharge health seeking behaviour and mortality. We also seek to lay the groundwork to study the long-term effects of sepsis on morbidity over a 10 year period.</li></ol> <br /><strong>Data Collection Methods:</strong> All data were collected at the point of care using encrypted study tablets. These data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge.<br /> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16; No. 07/01-21), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679).<br /> <br /><strong>Associated datasets:</strong> <br /> <a href = "https://borealisdata.ca/dataset.xhtml?persistentId=doi:10.5683/SP3/REPMSY">Post-discharge mortality among children under 5 years admitted with suspected sepsis in Uganda: a prospective multi-site study </a><br /> <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."
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Borealis
Wiens, Matthew; Businge, Stephen; Larson, Charles P; Moschovis, Peter P; Singer, Joel; Kumbakumba, Elias; Novakowski, Stefanie; Lavoie, Pascal; Dumont, Guy AM; Ansermino, J Mark; Kabakyenga, Jerome; Kissoon, Niranjan 2021-05-04 <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab." This data is a subset of the Smart Discharges Uganda Under 5 years parent study and is specific to the Phase I observational cohort of children aged 6-60m. <br> <br/><strong>Objective(s):</strong> Used as part of the Smart Discharge prediction modelling for adverse outcomes such as post-discharge death and readmission. <br> <br /><strong>Data Description:</strong> All data were collected at the point of care using encrypted study tablets and these data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge. . <br> <br /><strong>Data Processing:</strong> Created z-scores for anthropometry variables using height and weight according to WHO cutoff. Distance to hospital was calculated using latitude and longitude. Extra symptom and diagnosis categories were created based on text field in these two variables. BCS score was created by summing all individual components.<br> <br /><strong>Limitations:</strong> There are missing dates and the admission, discharge, and readmission dates are not in order. <br> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679). This manuscript adheres to the guidelines for STrengthening the Reporting of OBservational studies in Epidemiology (STROBE).
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Borealis
Wiens, Matthew O; Kabakyenga, Jerome; Kumbakumba, Elias; Businge, Stephen; Kenya-Mugisha, Nathan; Larson, Charles P; Moschovis, Peter P; Singer, Joel; Lavoie, Pascal; Dumont, Guy AM; Ansermino, J Mark; Kissoon, Niranjan 2024-10-22 This data is a subset of the Smart Discharges Uganda Under 5 years parent study and is specific to the Phase I observational cohort of children aged 0-6 months containing <strong>pulse oximetry</strong> data. <br /> <br /><strong>Background:</strong> Substantial mortality occurs after hospital discharge in children under 5 years old with suspected sepsis. This study aimed to refine and externally validate a previously developed post-discharge mortality prediction model.<br /> <br /><strong>Methods:</strong> In this prospective observational cohort study, we recruited 0-6-month-old children admitted with suspected sepsis from the community to the paediatric wards of six Ugandan hospitals. The primary outcome was six-month post-discharge mortality among those discharged alive. <br /> <br /><strong>Data Collection Methods:</strong> All data were collected at the point of care using encrypted study tablets and these data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge.<br /> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679). This manuscript adheres to the guidelines for STrengthening the Reporting of OBservational studies in Epidemiology (STROBE). <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."
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Borealis
Wiens, Matthew O; Kabakyenga, Jerome; Kumbakumba, Elias; Kenya-Mugisha, Nathan; Larson, Charles P; Moschovis, Peter P; Singer, Joel; Lavoie, Pascal; Dumont, Guy AM; Ansermino, J Mark; Kissoon, Niranjan 2024-10-22 This data is a subset of the Smart Discharges Uganda Under 5 years parent study and is specific to the Phase II interventional cohort of children aged 0-6 months containing <strong>pulse oximetry</strong> data. <br /> <br /><strong>Background:</strong> Substantial mortality occurs after hospital discharge in children under 5 years old with suspected sepsis. This study aimed to refine and externally validate a previously developed post-discharge mortality prediction model.<br /> <br /><strong>Methods:</strong> In this prospective observational cohort study, we recruited 0-6-month-old children admitted with suspected sepsis from the community to the paediatric wards of six Ugandan hospitals. The primary outcome was six-month post-discharge mortality among those discharged alive. <br /> <br /><strong>Data Collection Methods:</strong> All data were collected at the point of care using encrypted study tablets and these data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge.<br /> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679). This manuscript adheres to the guidelines for STrengthening the Reporting of OBservational studies in Epidemiology (STROBE). <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.
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Borealis
Wiens, Matthew O; Kabakyenga, Jerome; Kumbakumba, Elias; Kenya-Mugisha, Nathan; Larson, Charles; Moschovis, Peter P; Singer, Joel; Lavoie, Pascal; Dumont, Guy AM; Ansermino, J Mark; Kissoon, Niranjan 2024-10-22 This data is a subset of the Smart Discharges Uganda Under 5 years parent study and is specific to the Phase II interventional cohort of children aged 6-60 months containing <strong>pulse oximetry</strong> data. <br /> <br /><strong>Background:</strong> Substantial mortality occurs after hospital discharge in children under 5 years old with suspected sepsis. This study aimed to refine and externally validate a previously developed post-discharge mortality prediction model.<br /> <br /><strong>Methods:</strong> In this prospective observational cohort study, we recruited 0-6-month-old children admitted with suspected sepsis from the community to the paediatric wards of six Ugandan hospitals. The primary outcome was six-month post-discharge mortality among those discharged alive. <br /> <br /><strong>Data Collection Methods:</strong> All data were collected at the point of care using encrypted study tablets and these data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge.<br /> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679). This manuscript adheres to the guidelines for STrengthening the Reporting of OBservational studies in Epidemiology (STROBE). <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.
UBC Dataverse Logo
Borealis
Wiens, Matthew; Businge, Stephen; Tagoola, Abner; Larson, Charles P; Moschovis, Peter P; Singer, Joel; Kumbakumba, Elias; Novakowski, Stefanie; Lavoie, Pascal; Dumont, Guy AM; Ansermino, J Mark; Kabakyenga, Jerome; Kissoon, Niranjan 2024-10-22 This data is a subset of the Smart Discharges Uganda Under 5 years parent study and is specific to the Phase I observational cohort of children aged 0-6 months. <br> <br/><strong>Objective(s):</strong> Used as part of the Smart Discharge prediction modelling for adverse outcomes such as post-discharge death and readmission. <br> <br /><strong>Data Description:</strong> All data were collected at the point of care using encrypted study tablets and these data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge. . <br> <br /><strong>Data Processing:</strong> Created z-scores for anthropometry variables using height and weight according to WHO cutoff. Distance to hospital was calculated using latitude and longitude. Extra symptom and diagnosis categories were created based on text field in these two variables. BCS score was created by summing all individual components.<br> <br /><strong>Limitations:</strong> There are missing dates and the admission, discharge, and readmission dates are not in order. <br> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679). This manuscript adheres to the guidelines for STrengthening the Reporting of OBservational studies in Epidemiology (STROBE). <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."

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