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Huxford, Charly; Dunsmuir, Dustin; Pillay, Yashodani; Ashebukara, Ivan Aye; Tusingwire, Fredson; Novakowski, Stefanie; Behan, Justine; Hwang, Bella; Ansermino, Mark; Lester, Deborah; Kissoon, Niranjan; Tagoola, Abner — 2023-11-15 <br /><strong>Objective(s):</strong> The Smart Triage Quality Improvement Training Program covers the basic concepts of the Quality Improvement process and provides a framework and tools that can be used to train staff on QI. Core learning components include: 1) understanding what QI is; 2) the QI model for improvement; and 3) QI methods and tools. <br /> <br /><strong>Data Description:</strong> This dataset includes the following materials for use in the Smart Triage Quality Improvement Training Program: 1) Quality Improvement Guide; 2) QI Activities Workbook. Materials were originally developed through a partnership with Walimu and the University of British Columbia. All materials are provided in the English language. <br /> <br /><strong>Data Limitations:</strong> These materials were designed for the Ugandan context and may not be generalizable to other settings. <br /> <br /><strong>Data Ethics Declaration:</strong> NA <br /> <br /><strong>Funding Source(s):</strong> BC Children's Hospital Foundation; Grand Challenges Canada; Mining4Life; Wellcome <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>.

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."

Murthy, Srinvivas; Kinshella, Maggie Woo; Trawin, Jessica; Johnson, Teresa; Kissoon, Niranjan; Wiens, Matthew; Ogilvie, Gina; Dhugga, Gurm; Ansermino, J Mark — 2023-04-18 <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." <strong>Objective(s):</strong> Momentum for open access to research is growing. Funding agencies and publishers are increasingly requiring researchers make their data and research outputs open and publicly available. However, clinical researchers struggle to find real-world examples of Open Data sharing. <br /> <br />The aim of this 1 hr virtual workshop is to provide real-world examples of Open Data sharing for both qualitative and quantitative data. <br /> <br />Specifically, participants will learn:<br /> 1. Primary challenges and successes when sharing quantitative and qualitative clinical research data. <br /> <br />2. Platforms available for open data sharing.<br /> <br />3. Ways to troubleshoot data sharing and publish from open data.<br /> <br />Workshop Agenda:<br /> <br />1. “Data sharing during the COVID-19 pandemic” - Speaker: Srinivas Murthy, Clinical Associate Professor, Department of Pediatrics, Faculty of Medicine, University of British Columbia. Investigator, BC Children's Hospital <br /> <br />2. “Our experience with Open Data for the 'Integrating a neonatal healthcare package for Malawi' project.” - Speaker: Maggie Woo Kinshella, Global Health Research Coordinator, Department of Obstetrics and Gynaecology, BC Children’s and Women’s Hospital and University of British Columbia <br /> <br />This workshop draws on work supported by the Digital Research Alliance of Canada.<br /> <br /><strong>Data Description:</strong> Presentation slides, Workshop Video, and Workshop Communication<br /> <br />Srinivas Murthy: Data sharing during the COVID-19 pandemic presentation and accompanying PowerPoint slides.<br /> <br />Maggie Woo Kinshella: Our experience with Open Data for the 'Integrating a neonatal healthcare package for Malawi' project presentation and accompanying Powerpoint slides.<br /> <br />This workshop was developed as part of Dr. Ansermino's Data Champions Pilot Project supported by the <a href = "https://alliancecan.ca/en">Digital Research Alliance of Canada</a>.<br />

Huxford, Charly; Nguyen, Vuong; Trawin, Jessica; Johnson, Teresa; Kissoon, Niranjan; Wiens, Matthew; Ogilvie, Gina; Murthy, Srinivas; Dhugga, Gurm; Kinshella, Maggie Woo; Ansermino, J Mark — 2023-04-18 <strong>Objective(s):</strong> Momentum for open access to research is growing. Funding agencies and publishers are increasingly requiring researchers make their data and research outputs open and publicly available. However, this introduces many challenges, especially when managing confidential clinical data.<br /> <br />The aim of this 1 hr virtual workshop is to provide participants with knowledge about what synthetic data is, methods to create synthetic data, and the 2023 Pediatric Sepsis Data Challenge.<br /> <br />Workshop Agenda:<br /> <br />1. Introduction - Speaker: Mark Ansermino, Director, Centre for International Child Health <br /> <br />2. "Leveraging Synthetic Data for an International Data Challenge" - Speaker: Charly Huxford, Research Assistant, Centre for International Child Health <br /> <br />3. "Methods in Synthetic Data Generation." - Speaker: Vuong Nguyen, Biostatistician, Centre for International Child Health and The HIPpy Lab <br /> <br />This workshop draws on work supported by the Digital Research Alliance of Canada.<br /> <br /><strong>Data Description:</strong> Presentation slides, Workshop Video, and Workshop Communication<br /> <br />Charly Huxford: Leveraging Synthetic Data for an International Data Challenge presentation and accompanying PowerPoint slides.<br /> <br />Vuong Nguyen: Methods in Synthetic Data Generation presentation and accompanying Powerpoint slides.<br /> <br />This workshop was developed as part of Dr. Ansermino's Data Champions Pilot Project supported by the <a href = "https://alliancecan.ca/en">Digital Research Alliance of Canada</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."

Kissoon, Niranjan; Fung, Jollee; Hwang, Bella; Trawin, Jessica; Symonds, Nicola; Knappett, Martina; Krepiakevich, Alexia; Liu, Christine; Businge, Stephen; Jabornisky, Roberto; Suiyven, Dzelamunyuy; Talla, Emmanuela; Nwankwor, Odiraa; Tagoola, Abner; Oguonu, Tagbo; Karlovich, Gabrielle; Kenechi, Onah Stanley; Dunsmuir, Dustin; Wiens, Matthew; Ansermino, J Mark — 2020-04-17 The purpose of this environmental scan is to support health facilities in identifying and assessing quality improvement (QI) priorities and initiatives to treat children with sepsis. <br /> <br /><strong><u>Tools Description:</strong></u> <br /><strong>Step 1 Environmental Scan</strong> - A health facility survey that gathers information regarding (1) the availability of resources and services in the health facility and (2) the readiness of the health facility to provide specific services to a defined minimum standard. <br /><strong>Step 2 Technology Readiness Scan</strong> - A short survey that aims to assess a facility’s level of technological preparedness for facilitating standard triage and discharge processes. Ultimately, it determines what technology is needed in order to effectively implement quality improvement intervention. <br /><strong>Step 3a-f Observational Scan</strong> - Assesses the quality and safety of care through observation of a health worker in suspected cases of pneumonia, diarrhea, and malaria, in order to assess adherence to standards in the patient care process. <br /><strong>Step 4 Caretaker Satisfaction Questionnaire</strong> - Assesses the patient-caretakers’ perspective of the quality of care they/their child received while at the facility. <br /><strong>Step 5 Health Worker Satisfaction Questionnaire</strong> - Assesses health workers’ perspectives of the quality of care provided at the facility. <br /><strong>Environmental Scan Feedback Survey</strong> - To be completed by data collector(s) and asks questions pertaining to the Scan’s relevancy and usability. The intention of this form is to collect suggestions on what elements of the Scan to add, eliminate, or modify to inform future module updates. <br /><strong>Written Report Of Results Feedback Survey</strong> - This survey asks questions pertaining to the presentation and value of the results report. <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."

Wiens, Matthew O; Bone, Jeffrey N; Kumbakumba, Elias; Businge, Stephen; Tagoola, Abner; Sherine, Sheila Oyella; Byaruhanga, Emmanuel; Ssemwanga, Edward; Barigye, Celestine; Nsungwa, Jesca; Olaro, Charles; Ansermino, J Mark; Kissoon, Niranjan; Singer, Joel; Larson, Charles P; Lavoie, Pascal M; Dunsmuir, Dustin; Moschovis, Peter P; Novakowski, Stefanie; Komugisha, Clare; Tayebwa, Mellon; Mwesignwa, Douglas; Knappett, Martina; West, Nicholas; Nguyen, Vuong; Mugisha, Nathan-Kenya; Kabakyenga, Jerome — 2022-12-06 <br /><strong>Background:</strong> Substantial mortality occurs after hospital discharge in children younger than 5 years with suspected sepsis, especially in low-income countries. A better understanding of its epidemiology is needed for effective interventions to reduce child mortality in these countries. We evaluated risk factors for death after discharge in children admitted to hospital for suspected sepsis in Uganda, and assessed how these differed by age, time of death, and location of death. <br /> <br /><strong>Methods:</strong> In this prospective observational cohort study, we recruited 0-60-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. We evaluated the interactive impact of age, time of death, and location of death on risk factors for mortality.<br /> <br /><strong>Findings:</strong> 6,545 children were enrolled, with 6,191 discharged alive. The median (interquartile range) time from discharge to death was 28 (9-74) days, with a six-month post-discharge mortality rate of 5·5%, constituting 51% of total mortality. Deaths occurred at home (45%), in-transit to care (18%), or in hospital (37%) during a subsequent readmission. Post-discharge death was strongly associated with weight-for-age z-scores < -3 (adjusted risk ratio [aRR] 4·7, 95% CI 3·7–5·8 vs a Z score of >–2), referral for further care (7·3, 5·6–9·5), and unplanned discharge (3·2, 2·5–4·0). The hazard ratio of those with severe anaemia increased with time since discharge, while the hazard ratios of discharge vulnerabilities (unplanned, poor feeding) decreased with time. Age influenced the effect of several variables, including anthropometric indices (less impact with increasing age), anaemia (greater impact), and admission temperature (greater impact).<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>Data Processing Methods:</strong> For this analysis, data from both cohorts (0-6 months and 6-60 months) were combined and analysed as a single dataset. We used periods of overlapping enrolment (72% of total enrolment months) between the two cohorts to determine site-specific proportions of children who were 0-6 and 6-60 months of age. These proportions were used to weight the cohorts for the calculation of overall mortality rate. Z-scores were calculated using height and weight. Hematocrit was converted to hemoglobin. 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>Abbreviations:</strong><br /> MUAC -mid upper arm circumference<br /> wfa – weight for age<br /> wfl – weight for length<br /> bmi – body mass index<br /> lfa – length for age<br /> abx - antibiotics<br /> hr – heart rate<br /> rr – respiratory rate<br /> antimal - antimalarial<br /> sysbp – systolic blood pressure<br /> diasbp – diastolic blood pressure<br /> resp – respiratory<br /> cap - capillary<br /> BCS - Blantyre Coma Scale<br /> dist- distance<br /> hos - hospital<br /> ed - education<br /> disch - discharge<br /> dis -discharge<br /> fu – follow-up<br /> pd – post-discharge<br /> loc - location<br /> materl - maternal<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 /> <br /><strong>Study Protocol & Supplementary Materials:</strong> <br /> <a href = "https://borealisdata.ca/dataset.xhtml?persistentId=doi%3A10.5683%2FSP3%2FQRUMNQ&version=1.0">Smart Discharges to improve post-discharge health outcomes in children: A prospective before-after study with staggered implementation </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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.

Mawji, Alishah; Longstaff, Holly; Trawin, Jessica; Komugisha, Clare; Novakowski, Stefanie K.; Wiens, Matt; Akech, Samuel; Tagoola, Abner; Kissoon, Niranjan; Ansermino, Mark J. — 2023-03-15 <strong>Objective(s):</strong> Data sharing has enormous potential to accelerate and improve the accuracy of research, strengthen collaborations, and restore trust in the clinical research enterprise. Nevertheless, there remains reluctancy to openly share raw data sets, in part due to concerns regarding research participant confidentiality and privacy. We provide an instructional video to describe a standardized de-identification framework that can be adapted and refined based on specific context and risks.<br /> <br /><strong>Data Description:</strong> Training video, presentation slides.<br /> <br /><strong>Related Resources:</strong> The data de-identification algorithm, dataset, and data dictionary that correspond with this training video are available through the <a href = "https://borealisdata.ca/dataset.xhtml?persistentId=doi:10.5683/SP3/MSTH98 ">Smart Triage sub-Dataverse.</a> <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."

Kissoon, Niranjan; Fung, Jollee; Hwang, Bella; Trawin, Jessica; Krepiakevich, Alexia; Symonds, Nicola; Knappett, Martina; Liu, Christine; Businge, Stephen; Jabornisky, Roberto; Suiyven, Dzelamunyuy; Talla, Emmanuela; Nwankwor, Odiraa; Tagoola, Abner; Oguonu, Tagbo; Karlovich, Gabrielle; Kenechi, Onah Stanley; Dunsmuir, Dustin; Wiens, Matthew; Ansermino, J Mark — 2021-06-24 The purpose of this environmental scan is to support health facilities in identifying and assessing quality improvement (QI) priorities and initiatives to treat children with sepsis. This dataset contains training materials for project setup and data collection. <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."

Kissoon, Niranjan; Fung, Jollee; Hwang, Bella; Trawin, Jessica; Symonds, Nicola; Knappett, Martina; Krepiakevich, Alexia; Liu, Christine; Businge, Stephen; Jabornisky, Roberto; Suiyven, Dzelamunyuy; Talla, Emmanuela; Nwankwor, Odiraa; Tagoola, Abner; Oguonu, Tagbo; Karlovich, Gabrielle; Kenechi, Onah Stanley; Dunsmuir, Dustin; Wiens, Matthew; Ansermino, J Mark — 2021-08-03 The purpose of this environmental scan is to support health facilities in identifying and assessing quality improvement (QI) priorities and initiatives to treat children with sepsis. This dataset contains generic protocol and templates, written consent form templates, and verbal consent scripts to assist project teams in the ethics application process. <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."

Barsky, Eugene; Schichter, Brittney; Trawin, Jessica; Johnson, Teresa; Kissoon, Niranjan; Wiens, Matthew; Ogilvie, Gina; Murthy, Srinivas; Dhugga, Gurm; Kinshella, Maggie Woo; Ansermino, J Mark — 2023-03-10 <strong>Objective(s):</strong> Momentum for open access to research is growing. Funding agencies and publishers are increasingly requiring researchers make their data and research outputs open and publicly available. However, this introduces many challenges, especially when managing potentially sensitive clinical data.<br /> <br />The aim of this 1 hr virtual workshop is to provide participants with foundational knowledge that supports planning for open data in future research projects.<br /> <br />Specifically, participants will:<br /> 1. Gain an understanding of the new Tri-Agency Research Data Management policy and the analogous progress of the University of British Columbia's (UBC) Research Data Management (RDM) strategy and how they can be applied.<br /> <br />2. Gain an understanding of the ethical, privacy, and legal considerations of sharing data.<br /> <br />3. Learn practical skills for incorporating open data language into REB applications and consent form.<br /> <br />Workshop Agenda:<br /> <br />1. "Becoming familiar with the new Tri-Agency Research Data Management Policy" - Speaker: Eugene Barsky, Research Data Librarian, UBC Library<br /> <br />2. "Ethics and Practical Considerations of Open Data Sharing." - Speaker: Brittney Schichter, Director, Research Integration & Innovation, Provincial Health Service Authority (PHSA) Research and Academic Services<br /> <br />This workshop draws on work supported by the Digital Research Alliance of Canada.<br /> <br /><strong>Data Description:</strong> Presentation slides, Workshop Video, and Workshop Communication<br /> <br />Eugene Barksy: Tri-Agency Research Data Management Policy presentation and accompanying PowerPoint slides.<br /> <br />Brittney Schichter: Ethics and Practical Considerations of Open Data Sharing presentation and accompanying Powerpoint slides.<br /> <br />This workshop was developed as part of Dr. Ansermino's Data Champions Pilot Project supported by the <a href = "https://alliancecan.ca/en">Digital Research Alliance of Canada</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."

Ansermino, Mark; Wiens, Matthew; Khowaja, Asif; Kissoon, Niranjan — 2020-12-09 Data was collected from September to December 2019 via a mixed-methods approach to: 1) Identify cost drivers 2) Estimate out-of-pocket costs 3) Conduct a cost-effectiveness analysis of the Smart Discharge program. <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."

Ansermino, J Mark; Tagoola, Abner; Akech, Samuel; Mawji, Alishah; Wiens, Matthew O; Kissoon, Niranjan; Li, Edmond; Kenya-Mugisha, Nathan — 2024-11-20 This data is the Saving young lives: Triage and treatment using the pediatric rapid sepsis trigger (PRST) tool study. Data collected for this study occurred from April 2020 to April 2022. <br> <br/><strong>Objective(s):</strong> This is a pre-post intervention study involving pediatric patients presenting to the study hospitals in seek of medical care for an acute illness. The purpose of this study was to develop a prediction model and to perform clinical validation of a digital triage tool to guide triage and treatment of children at health facilities in LMICs with severe infections/suspected sepsis. The study involved three phases: (I) Baseline Period, (II) Interphase Period, (III) Intervention Period. The study hospitals include 2 sites in Kenya (1 control site, 1 experimental site) and 2 in Uganda (1 control site, 1 experimental site). <br> <br /><strong>Data Description:</strong> Predictor variables were collected at the time of triage by trained study nurses using a custom-built mobile application. All data entered into the mobile application was stored an encrypted database. Data was uploaded directly from the mobile device to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). Outcomes were obtained from facility records or telephone follow-up at 7-10 days and the data was collected electronically. Time-specific outcomes were tracked using an RFID tagging system with study personnel as backup. <br> <br /><strong>Limitations:</strong> There is missing data and some variables were not collected at all sites. <br> <br /><strong>Ethics Declaration:</strong> This study was approved by the Makerere University Higher Degrees research and Ethics Committee (No. 743), the Uganda National Institute of Science and Technology (HS 528ES), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H19-02398 & H20-00484). <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>.

Wiens, Matthew O; Tagoola, Abner; Kissoon, Niranjan; Ansermino, J Mark; Oyella Sherine, Sheila; Byaruhanga, Emmanuel; Ssemwanga, Edwards; Zhang, Cherri; Nguyen, Vuong; Bone, Jeffery N; Kenya Mugisha, Nathan; Kumbakumba, Elias; Kabakyenga, Jerome — 2024-07-22 <br/><strong>Background:</strong> In Sub-Saharan Africa, pediatric post-discharge death is increasingly recognized as an important contributor to mortality. Current studies evaluating interventional approaches for post-discharge mortality focus on pharmacologic therapy, though only malaria prophylaxis post-discharge appears effective. Approaches to reduce vulnerability through health system strengthening approaches may further help to improve outcomes. This study aimed to evaluate the impact of a risk-differentiated approach to improved peri-discharge care on post-discharge mortality among children under 60 months.<br /> <br /><strong>Methods:</strong> We conducted a prospective parallel cluster crossover trial at 6 hospitals in Uganda. Children <60 months admitted due to suspected infectious illness were eligible for enrollment. Phase 1 was a comparative control. During phase 2, enrolled children were screened for post-discharge mortality risk at admission using a multivariable risk algorithm. All children received counselling on post-discharge care practices during admission and at discharge. High-risk children received referrals and automated SMS engagement at 2, 7 and 14 days at a clinic of their choice, or by a community health worker. Survival analysis, adjusting for age, sex, site, period time and predicted risk of mortality was used to estimate the effect of the intervention on 6-month all-cause post-discharge mortality.<br /> <br /><strong>Findings:</strong> 13,050 patients were enrolled (phase 1: n=6954; phase 2: n=6096) and had complete 6-month follow-up. Baseline characteristics were similar between groups. The median age was 0.8 months (IQR: 0.2-1.7), with 56% of participants male. The multivariable risk algorithm gave a mean predicted risk of post-discharge mortality of 6.1% in phase 1 and 5.9% in phase 2. The rate of post-discharge mortality was 6.0% during phase 1 and 4.9% during phase 2, with an adjusted hazard ratio of 0.77 (95% CI – 0.90), favoring the intervention. Additional sensitivity analysis using different sets of covariates in the model showed similar results. <br /> <br /><strong>Ethics Declaration:</strong> These studies were approved by the Mbarara University of Science and Technology (No. 15/10-16), the Uganda National Council for Science and Technology (HS 2207), and the University of British Columbia (H16-02679).<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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.

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."

Asdo, Ahmad; Mawji, Alishah; Omara, Isaac; Aye Ishebukara, Ivan Aine; Komugisha, Clare; Novakowski, Stefanie; Pillay, Yashodani; Wiens, Matthew O; Akech, Samuel; Oyella, Florence; Tagoola, Abner; Kissoon, Niranjan; Ansermino, J Mark; Dunsmuir, Dustin — 2024-03-14 <br /><strong>Background:</strong> Pneumonia is the leading cause of death in children globally. In low- and middle-income countries the diagnosis of pneumonia relies heavily on an accurate assessment of respiratory rate, which can be unreliable in nurses and clinicians with less advanced training. In order to inform more accurate measurements, we investigate the repeatability of the RRate app used by nurses in district hospitals in Uganda. <br/> <br /><strong>Methods:</strong> This planned secondary analysis included 3679 children aged 0-5 years. The dataset had two sequential measurements of respiratory rate using the RRate app. We measured the agreement between respiratory rate observations and clustering around fixed thresholds defined by WHO for fast breathing, which are 60 breaths per minute (bpm) for under two months (Age-1), 50 bpm for two to 12 months (Age-2), and 40 bpm for 12.1 to 60 months (Age-3). We then assessed the repeatability of the paired measurements using the Intraclass Correlation Coefficient (ICC). <br/> <br /><strong>Results:</strong> The respiratory rate measurement took less than 15 seconds for 7,277 (98.9%) of the measurements. Despite respiratory rates clustering around the WHO fast-breathing thresholds, the breathing classification based on the thresholds was changed in only 12.6% of children. The mean (SD) respiratory rate by age group was 60 (13.1) bpm for Age-1, 49 (11.9) bpm for Age-2, and 38 (10.1) for Age-3, and the bias (Limits of Agreements) were 0.3 (-10.8 – 11.3), 0.4 (-8.5 – 9.3), and 0.1 (-6.8, 7.0) for Age-1, Age-2, and Age-3 respectively. Most importantly, the repeatability of the two respiratory rate measurements for the 3,679 children was high, with an ICC value (95% CI) of 0.95 (0.94 – 0.95). <br/> <br /><strong>Discussion:</strong> The RRate measurements were both efficient and repeatable. The simplicity, repeatability, and efficiency of the RRate app used by healthcare workers in LMICs supports more widespread adoption for clinical use. <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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.

Kabajaasi, Olive; Trawin, Jessica; Derksen, Brooklyn; Komugisha, Clare; Mwaka, Savio; Waiswa, Peter; Nsungwa-Sabiiti, Jesca; Ansermino, J Mark; Kissoon, Niranjan; Duby, Jessica; Kenya-Mugisha, Nathan; Wiens, Matthew O — 2023-06-29 <br /><strong>Background:</strong> The World Health Organization (WHO) Integrated Management of Childhood Illness (IMCI) guidelines recognize the importance of discharge planning to ensure continuation of care at home and appropriate follow-up. However, insufficient attention has been paid to post discharge planning in many hospitals contributing to poor implementation. To understand the reasons for suboptimal discharge, we evaluated the pediatric discharge process from hospital admission through the transition to care within the community in Ugandan hospitals. <br /> <br /><strong>Methods:</strong> This mixed methods prospective study enrolled 92 study participants in three phases: patient journey mapping for 32 admitted children under-5 years of age with suspected or proven infection, discharge process mapping with 24 pediatric healthcare workers, and focus group discussions (FDGs) with 36 primary caregivers and fathers of discharged children. Data were descriptively and thematically analyzed.<br /> <br /><strong>Findings:</strong> The typical discharge process is often not centered around the needs of the child and family. Discharge planning often does not begin until immediately prior to discharge and generally does not include caregiver input. Discharge education and counselling are generally limited, rarely involves the father, and does not focus significantly on post-discharge care or follow-up. Delays in the discharge process itself occur at multiple points, including while awaiting a physical discharge order and then following a discharge order, mainly with billing or transportation issues.<br /> <br /><strong>Data Collection Methods:</strong> <strong>Journey mapping</strong> data were collected using the REDCap Mobile App and were then uploaded to a REDCap database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). Study nurses conducted direct observation during in-hospital care as well as caregiver interviews at admission and 72 hours post-discharge using a series of checklists and close-ended questions with some open-entry questions to identify process outcomes as well as barriers and facilitators to the patient’s journey. Healthcare provider working groups engaged in two brainstorming sessions per hospital to develop a <strong>process map</strong> of each hospital’s current pediatric discharge process and to identify inefficiencies to care and potential solutions. Using paper, pens, and sticky notes, group members jointly mapped out the discharge pathways of their respective facilities and jointly identified all stages of the process. Data were captured using worksheets and audio recordings. A trained research assistant facilitated <strong>FGD</strong> two weeks after direct observation concluded with patient caregivers. Participants were asked to respond to open-ended questions that focused on their experiences regarding their child’s admission, hospital stay, discharge and post-discharge. All FGDs were digitally recorded, transcribed verbatim and translated into English by external individuals fluent in the languages. Healthcare provider working groups engaged in two brainstorming sessions per hospital to develop a map of each hospital’s current pediatric discharge process and to identify inefficiencies to care and potential solutions. <br /> <br /><strong>Ethics Declaration:</strong> Ethical approvals were obtained from Makerere University (HDREC #850), Uganda National Council for Science and Technology (#HS929ES) and the University of British Columbia (UBC C&W REB # H20-02519).<br /> <br /><strong>Study Protocol & Supplementary Materials:</strong> <br /> <a href = "https://doi.org/10.5683/SP3/IDLGNN">Smart Discharges Transition to Scale</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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.

Knappett, Martina; Nguyen, Vuong; Chaudhry, Maryum; Trawin, Jessica; Kabakyenga, Jerome; Kumbakumba, Elias; Jacob, Shevin T; Ansermino, J Mark; Kissoon, Niranjan; Kenya-Mugisha, Nathan; Wiens, Matthew O — 2024-02-02 <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>. <br/><strong>Background:</strong> Under-five mortality remains concentrated in resource-poor countries. Post-discharge mortality is becoming increasingly recognized as a significant contributor to overall child mortality. With a substantial recent expansion of research and novel data synthesis methods, this study aims to update the current evidence base by providing a more nuanced understanding of the burden and associated risk factors of pediatric post-discharge mortality after acute illness.<br /> <br /><strong>Methods:</strong> Eligible studies published between January 1, 2017 and January 31, 2023, were retrieved using MEDLINE, Embase, and CINAHL databases. Studies published before 2017 were identified in a previous review and added to the total pool of studies. Only studies from countries with low or low-middle Socio-Demographic Index with a post-discharge observation period greater than seven days were included. Risk of bias was assessed using a modified version of the Joanna Briggs Institute critical appraisal tool for prevalence studies. Studies were grouped by patient population, and 6-month post-discharge mortality rates were quantified by random-effects meta-analysis. Secondary outcomes included post-discharge mortality relative to in-hospital mortality, pooled risk factor estimates, and pooled post-discharge Kaplan–Meier survival curves. PROSPERO study registration: #CRD42022350975.<br /> <br /><strong>Findings:</strong> Of 1963 articles screened, 42 eligible articles were identified and combined with 22 articles identified in the previous review, resulting in 64 total articles. These articles represented 46 unique patient cohorts and included a total of 105,560 children. For children admitted with a general acute illness, the pooled risk of mortality six months post-discharge was 4.4% (95% CI: 3.5%–5.4%, I2 = 94.2%, n = 11 studies, 34,457 children), and the pooled in-hospital mortality rate was 5.9% (95% CI: 4.2%–7.7%, I2 = 98.7%, n = 12 studies, 63,307 children). Among disease subgroups, severe malnutrition (12.2%, 95% CI: 6.2%–19.7%, I2 = 98.2%, n = 10 studies, 7760 children) and severe anemia (6.4%, 95% CI: 4.2%–9.1%, I2 = 93.3%, n = 9 studies, 7806 children) demonstrated the highest 6-month post-discharge mortality estimates. Diarrhea demonstrated the shortest median time to death (3.3 weeks) and anemia the longest (8.9 weeks). Most significant risk factors for post-discharge mortality included unplanned discharges, severe malnutrition, and HIV seropositivity.<br /> <br /><strong>Interpretation:</strong> Pediatric post-discharge mortality rates remain high in resource-poor settings, especially among children admitted with malnutrition or anemia. Global health strategies must prioritize this health issue by dedicating resources to research and policy innovation.<br /> <br /><strong>Data Processing Methods:</strong> Data were extracted using a standard data extraction form developed by the review authors. Kaplan–Meier survival curves, where provided, were extracted using a plot digitizer. The data extraction file, “PDMSR2024_DataExtraction_Dataset_SD” was generated as described above and analyzed as is. <br /> <br />Co-ordinates were extracted from the survival curves in their original, published form, using a plot digitizer (https://automeris.io/WebPlotDigitizer/). The co-ordinates for each survival curve were then cleaned up to: <br /> <br />1. Re-scale the time points to weeks<br /> 2. Curves which reported % mortality were converted to % survival (1 – mortality)<br /> 3. First co-ordinate was set to (0, 1), i.e., survival is 100% at time-point 0<br /> 4. Include the numbers at risk (if reported), primary reference, and subgroup information<br /> <br />Using these cleaned co-ordinates, individual-level patient data were extracted (see Guyot et al, 2012, <a href = "https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/1471-2288-12-9">doi.org/10.1186/1471-2288-12-9</a>) and the survival curves re-constructed to obtain the survival and number at risk at specified time-points (0-52 weeks). Where possible, disease and age subgroups were combined to create all admissions curves by combining the individual-level patient data from multiple curves in the same study. <br /> <br />Additional data from the survival curves were extracted to produce the “PDMSR2024_AdditionalDataSurvivalCurves6M_Dataset_SD” and “PDMSR2024_AdditionalDataSurvivalCurves12M_Dataset_SD” files by extracting the survival rate at 6 and 12 months. <br /> <br />Previously unpublished hazards ratios were extracted from the dataset used in the Wiens et al (2015) study on post-discharge mortality (<a href = "https://doi.org/10.1136%2Fbmjopen-2015-009449">doi:10.1136/bmjopen-2015-009449</a>) to produce the “PDMSR2024_Wiens2015HazardsRatios_Dataset_SD.xlsx” file. These original data are published on Dataverse at: <a href = "https://doi.org/10.5683/SP2/VBPLRM">doi.org/10.5683/SP2/VBPLRM</a> <br /> <br />Analyses were in R version 4.3.0 (R Foundation for Statistical Computing, Vienna, Austria), and RStudio version 2023.6.1 (RStudio, Boston, MA). <br /> <br /><strong>Additional Files:</strong> Survival curves in their original, published form, as well as survival curve coordinates files can be made available by request.

Wiens, Matthew; Trawin, Jessica; Komugisha, Clare; Mwaka, Savio; Nsungwa, Jesca; Kissoon, Niranjan; Ansermino, J Mark; Kenya-Mugisha, Nathan — 2023-06-15 <br /><strong>Dataset Description:</strong> This dataset contains materials from a the Smart Discharges Transition to Scale 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> In Uganda, approximately 5% of children admitted with severe infections die after they have been discharged from the hospital, mostly at home. Most of these deaths are preventable as they are largely due to the way that discharges are done and how follow-ups are planned. Health workers and caregivers are often unaware of this period of vulnerability and are poorly equipped to identify and handle this critical situation. Our previous work focused on developing and evaluating models and technology to predict, before discharge, an individual child’s risk of recurrent illness, as well as to provide additional post-discharge support to at-risk children. The goal of this project is to determine how best to scale the Smart Discharges Program through a four-phased approach, each corresponding to a specific objective. <strong>Phase I :</strong> aims to understand the reasons for suboptimal discharge by evaluating the pediatric discharge process from hospital admission through the transition to care within the community. <strong>Phase II :</strong> aims to assess pediatric discharge policies and facility readiness for change in a nationally representative sample of health facilities in Uganda. <strong>Phase III :</strong> aims to evaluate the effects of the Smart Discharges Health Worker Training Program on discharge care practices and procedures. <strong>Phase IV :</strong> aims to complete the facility-based linkage to care through the use of a community-based follow-up system. <br /> <br /><strong>Methods:</strong> Each of the four project phases utilizes different research methodologies. <strong>Phase I </strong> is a mixed methods prospective study utilizing patient journey mapping, discharge process mapping, and focus group discussions at 3 Ugandan Hospitals. <strong>Phase II </strong> is a cross-sectional, survey-based study conducted at 36 health facilities providing in-patient pediatric care in Uganda. <strong>Phase III and IV :</strong> (implemented together) is a quality improvement intervention at 16 health facilities in Uganda. <br /> <br /><strong>Discussion:</strong> Ultimately this work is focused on ensuring widespread adoption of Smart Discharges practices throughout Uganda by building capacity that ensures sustainability. Exploring and characterizing the existing pediatric discharge process, including human and health system factors that impact this process, will allow us to operationalize the Smart Discharges innovation into an effective health-systems approach to this neglected issue.<br /> <br /><strong>Ethics Declaration:</strong> Ethics approvals have been obtained from the Makerere University School of Public Health (MakSPH) Institutional Review Board (PI: 850; PII: 851; PIII/IV: 836), the Uganda National Council of Science and Technology (UNCST) in Uganda (PI: HS929ES; PII: HS928ES; PIII/IV: HS926ES) and the University of British Columbia in Canada (PI-IV: H20-02519). <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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.

Pillay, Yashodani; Ngonzi, Joseph; Nguyen, Vuong; Payne, Beth A.; Komugisha, Clare; Twinomujuni, Annet H.; Vidler, Marianne; Lavoie, Pascal M.; Bebell, Lisa M.; Christoffersen-Deb, Astrid; Kenya-Mugisha, Nathan; Kissoon, Niranjan; Ansermino, J Mark; Wiens, Matthew O — 2023-11-09 <br/><strong>Background:</strong> The first six weeks following delivery bear the most significant and persistent burden of under-5 and maternal death, and severe neonatal and maternal morbidity. Efforts are currently underway to improve outcomes immediately following births at health facilities for both mothers and newborns. However, care following facility discharge presents significant challenges and accounts for a high proportion of maternal and neonatal death and morbidity. The objective of this study is to develop a clinical risk prediction model using maternal and infant characteristics collected at the time of hospital discharge following a facility delivery to predict maternal or neonatal death or major morbidity within six weeks of birth. A secondary objective is to characterize the epidemiology of post-discharge mortality and morbidity for women and their infants after facility delivery. <br/> <br /><strong>Methods:</strong> We will recruit a cohort of 3200 maternal and infant pairs after delivery at Mbarara Regional Referral Hospital to develop the risk model. This study involves prospective recruitment and data collection prior to discharge and final follow-up at six weeks postpartum for both mom and baby. Initial data collection will be completed by study research nurses as a prospective chart review and time of discharge patient assessment. Data collection will include maternal socio-demographics variables, clinical condition during admission, details of delivery and co-morbid conditions and maternal and infant vital signs at hospital discharge. Six-week follow up will be completed in person at the facility or through telephone follow-up to capture any maternal or infant adverse outcomes, including details of any re-admission to hospital, occurring after the initial discharge.<br /> <br /><strong>Ethics Declaration:</strong> Institutional review boards at the University of British Columbia (H18-02523), the Mbarara University of Science and Technology (14/09-18), and the Uganda National Council for Science and Technology (SS 4853) approved the study.<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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.

Nguyen, Vuong; Huxford, Charly; Rafiei, Alireza; Wiens, Matthew; Ansermino, J Mark; Kissoon, Niranjan; Kamaleswaran, Rishikesan — 2023-06-21 <p><br /><strong>Objective(s):</strong> The 2024 Pediatric Sepsis Data Challenge provides an opportunity to address the lack of appropriate mortality prediction models for LMICs. For this challenge, we are asking participants to develop a working, open-source algorithm to predict in-hospital mortality and length of stay using only the provided synthetic dataset. <br> <br> The original data used to generate the real-world data (RWD) informed synthetic training set available to participants was obtained from a prospective, multisite, observational cohort study of children with suspected sepsis aged 6 months to 60 months at the time of admission to hospitals in Uganda. For this challenge, we have created a RWD-informed synthetically generated training data set to reduce the risk of re-identification in this highly vulnerable population. The synthetic training set was generated from a random subset of the original data (full dataset A) of 2686 records (70% of the total dataset - training dataset B). All challenge solutions will be evaluated against the remaining 1235 records (30% of the total dataset - test dataset C). <br> <br /><strong>Data Description:</strong> Report describing the comparison of univariate and bivariate distributions between the Synthetic Dataset and Test Dataset C. Additionally, a report showing the maximum mean discrepancy (MMD) and Kullback–Leibler (KL) divergence statistics. Data dictionary for the synthetic training dataset containing 148 variables. <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>.