scholarly journals An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology

2020 ◽  
Vol 93 (1107) ◽  
pp. 20190673 ◽  
Author(s):  
Miranda P. Lawell ◽  
Daniel J Indelicato ◽  
Arnold C Paulino ◽  
William Hartsell ◽  
Nadia N. Laack ◽  
...  

Objective: The Pediatric Proton/Photon Consortium Registry (PPCR) is a comprehensive data registry composed of pediatric patients treated with radiation. It was established to expedite outcomes-based research. The attributes which allow the PPCR to be a successful collaboration are reviewed. Methods and materials: Current eligibility criteria are radiotherapy patients < 22 years treated at one of the 15 US participating institutions. Detailed health and treatment data are collected about the disease presentation and treatment exposures, and annually thereafter, in REDCap (Research Electronic Data Capture). DICOM (Digital Imaging and Communications in Medicine) imaging and radiation plans are collected through MIM/MIMcloud. An optional patient-reported quality-of-life (PedsQL) study is administered at 10 sites. Results: Accrual started October 2012 with 2,775 participants enrolled as of 25 July 2019. Most patients, 62.0%, were treated for central nervous system (CNS) tumors, the most common of which are medulloblastoma (n = 349), ependymoma (n = 309), and glial/astrocytoma tumors (n = 279). The most common non-CNS diagnoses are rhabdomyosarcoma (n = 284), Ewing’s sarcoma (n = 153), and neuroblastoma (n = 130). While the majority of participants are US residents, 18.7% come from 36 other countries. Over 685 patients participate in the PedsQL study. Conclusions: The PPCR is a valuable research platform capable of answering countless research questions that will ultimately improve patient care. Centers outside of the USA are invited to participate directly or may engage with the PPCR to align data collection strategies to facilitate large-scale international research. Advances in knowledge: For investigators looking to carry out research in a large pediatric oncology cohort or interested in registry work, this paper provides an updated overview of the PPCR.

2021 ◽  
Vol 11 (22) ◽  
pp. 10537
Author(s):  
Adi A. AlQudah ◽  
Mostafa Al-Emran ◽  
Khaled Shaalan

Understanding the factors affecting the use of healthcare technologies is a crucial topic that has been extensively studied, specifically during the last decade. These factors were studied using different technology acceptance models and theories. However, a systematic review that offers extensive understanding into what affects healthcare technologies and services and covers distinctive trends in large-scale research remains lacking. Therefore, this review aims to systematically review the articles published on technology acceptance in healthcare. From a yield of 1768 studies collected, 142 empirical studies have met the eligibility criteria and were extensively analyzed. The key findings confirmed that TAM and UTAUT are the most prevailing models in explaining what affects the acceptance of various healthcare technologies through different user groups, settings, and countries. Apart from the core constructs of TAM and UTAUT, the results showed that anxiety, computer self-efficacy, innovativeness, and trust are the most influential factors affecting various healthcare technologies. The results also revealed that Taiwan and the USA are leading the research of technology acceptance in healthcare, with a remarkable increase in studies focusing on telemedicine and electronic medical records solutions. This review is believed to enhance our understanding through a number of theoretical contributions and practical implications by unveiling the full potential of technology acceptance in healthcare and opening the door for further research opportunities.


2020 ◽  
Vol 4 (1) ◽  
pp. 147-161
Author(s):  
Riswani Riswani ◽  
Yunita Yunita ◽  
Henny Malini ◽  
Thirtawati Thirtawati

The current rubber price fluctuation with downward trend, makes rubber farmers in South Sumatra experience a dilemma to carry out replanting. The majority of rubber plants that are more than 25 years old must be replanted because productivity decreases, if not done, farmers can lose their livelihoods because rubber farming is the main livelihood. This condition is the background of this study which aims to describe the rubber farming that is now being carried out by farmers in conditions approaching replanting and relatively low prices that have an impact on the quality of the Bokar, as well as analyzing the feasibility of rubber commodities from technical, management, marketing and financial aspects. The survey research was conducted in Muara Enim Regency as one of the rubber center areas in South Sumatra, primary data collection was conducted by interviewing 50 respondents who were randomly selected. Data processing is done by qualitative analysis methods, and followed by a feasibility analysis using the eligibility criteria of B / C ratio, R / C ratio, NPV, IRR, Payback ratio and BEP calculation, followed by sensitivity analysis. The analysis shows that the rubber plantation and Bokar processing undertaken by farmers has not followed the recommended rubber farming and Bokar processing, and although the current price conditions are still relatively low, it is still feasible to be undertaken as evidenced by all the values of the business feasibility criteria being in the feasible criteria, so replanting is still recommended for rubber plants that are no longer productive


2021 ◽  
Author(s):  
Despoina Petsani ◽  
Sara Ahmed ◽  
Vasileia Petronikolou ◽  
Eva Kehayia ◽  
Mika Alastalo ◽  
...  

BACKGROUND VITALISE is a H2020 project that aims to harmonize Living Lab procedures and facilitate the access to European Health and Wellbeing research infrastructures. In this context, this study presents a joint research activity (JRA) that will be conducted within VITALISE, in transitional care domain, in order to test and validate the harmonized Living Lab procedures and infrastructures. The collection of data from various sources (ICT, clinical and patient reported outcome measures) demonstrated capacity to assess risk and support decision during care transitions but there is no harmonized way of combining this information. OBJECTIVE This study primarily aims to evaluate the feasibility and benefit of collecting multichannel data across Living Labs on the topic of transitional care and to harmonize the data processes and collection. Secondly, we aim to investigate the collection and use of digital biomarkers and explore initial patterns in the data that demonstrate the potential to predict transition outcomes such as readmissions and adverse events. METHODS The current research protocol presents a multi-center, prospective, observational cohort study that will consist of three phases, running consecutively in multiple sites: a co-creation phase, a testing and simulation phase and a transnational pilot phase. The co-creation phase aims to build a common understanding among different sites, investigate the differences of hospitalization discharge management among countries and the willingness of different stakeholders to use technological solutions in the transitional care process. The testing and simulation phase aims to explore ways of integrating observation of a patient’s clinical condition, patient involvement and discharge education in transitional care. The objective of the simulation phase is to evaluate the feasibility and the barriers that are faced by a healthcare professional in assessing transition readiness. The transnational pilot phase takes input from co-creation and testing and stimulation phase. The aim is to pilot the already designed activities from previous phases and collect data to conduct a first predictive analysis. RESULTS The co-creation phase will be completed by April 2022. The testing and simulation phase will begin in September 2022 and will partially overlap with the deployment of the transnational pilot phase that will start the same month. The data collection of the transnational pilots will be finalized by the end of June 2023. Data processing is expected to be completed by March 2024. The results will consist of guidelines and implementation pathway for large scale study and the analysis for identifying initial patterns in the acquired data. CONCLUSIONS The knowledge acquired though this research will lead to harmonized procedures and data collection for Living Labs that support transitions in care. In addition, this research contributes to the increase in capacity to perform Big Data analytics while accounting for each local context and across Living Labs.


Author(s):  
Dan Spencer ◽  
Margareta M. Thomson ◽  
Jason P. Jones

The ability to collaborate successfully with others is a highly valued skill in the modern workplace and has been reflected in the increase of collaborative learning methods within education. Research has highlighted the crucial role of self-regulation in successful collaboration, and more recently begun to focus on understanding how groups jointly regulate their interactions. The current chapter outlines a mixed-methods study that compared the impact of individual- and group-centered prompts on the frequency of social metacognitive activities during online group review activities with college students (N=48) from the USA. Tentative study findings suggested that group-centered problematizing prompts were moderately successful in shifting groups towards more social forms of regulation such as co-regulation; however, they were not enough to move groups towards shared metacognitive regulation. Further results revealed how the quality of group engagement was influenced by participants' perceived value towards activities, function and focus of metacognitive episodes, and group dynamics.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 12087-12087
Author(s):  
Michelle Chen ◽  
Isabelle Baron ◽  
Stephanie Beaulieu ◽  
Annick Dufour ◽  
Nathalie Letarte ◽  
...  

12087 Background: Olanzapine is used as an adjunct antiemetic in oncology as salvage therapy and in four-drug prophylaxis. Growing literature supports its effectiveness in initial three-drug prophylaxis in highly emetogenic chemotherapy (HEC). Methods: This prospective, multi-centre, open-label study evaluated the feasibility of a large-scale randomized controlled trial comparing the effectiveness and tolerability of 5 mg olanzapine once daily for four days (starting the night before chemotherapy) versus standard dose aprepitant (in tritherapy with standard ondansetron and dexamethasone) in treatment-naive patients receiving the first cycle of a HEC. Secondary outcomes included: complete response (no nausea, no emesis, no use of rescue medication), complete remission (no emesis, no rescue medication), intensity of patient-reported nausea and emesis on a visual analog scale, quality of life (scored with the Functional Living Index Emesis [FLIE]), and incidence of adverse events. Results: We randomized 30 patients in an intent-to-treat analysis. The large-scale trial was deemed not feasible without support from a research centre. Complete response rates were significantly higher in the olanzapine group in the delayed phase (24-120h post-chemotherapy) (86,7% v 21,4%, p < 0,001) and overall phase (0-120h post-chemotherapy) (60,0% v 21,4%, p = 0,04). Similar results were observed for complete remission. Intensity of patient-reported nausea was significantly lower in the olanzapine group in the delayed phase (p = 0,001). FLIE scores were significantly lower for the nausea domain (mean 62,3 v 60,9, p = 0,004) and overall score (124,3 v 108,8, p = 0,006). Depression on the ESAS-R was more common in the aprepitant group (0% v 38%, p = 0,01). Other adverse events were not significantly different. Conclusions: Support from a research centre must be ensured for study feasibility. Tritherapy olanzapine significantly improved complete response and remission in the delayed and overall phases post-chemotherapy among patients receiving HEC. It was also associated with higher quality of life and a reassuring safety profile. This feasibility trial, despite its small sample size, is one of the first prospective randomised trials to suggest similar efficacy of 5 mg olanzapine to aprepitant and to measure a difference in patient quality of life with this regimen. Clinical trial information: NCT04075955 .


2020 ◽  
Vol 27 (5) ◽  
Author(s):  
M.L. Quan ◽  
I.A. Olivotto ◽  
N.N. Baxter ◽  
C.M. Friedenreich ◽  
K. Metcalfe ◽  
...  

Introduction The understanding of the biology and epidemiology of, and the optimal therapeutic strategies for, breast cancer (bca) in younger women is limited. We present the rationale, design, and initial recruitment of Reducing the Burden of Breast Cancer in Young Women (ruby), a unique national prospective cohort study designed to examine the diagnosis, treatment, quality of life, and outcomes from the time of diagnosis for young women with bca. Methods Over a 4-year period at 33 sites across Canada, the ruby study will use a local and virtual recruitment model to enrol 1200 women with bca who are 40 years of age or younger at the time of diagnosis, before initiation of any treatment. At a minimum, comprehensive patient, tumour, and treatment data will be collected to evaluate recurrence and survival. Patients may opt to complete patient-reported questionnaires, to provide blood and tumour samples, and to be contacted for future research, forming the core dataset from which 4 subprojects evaluating genetics, lifestyle factors, fertility, and local management or delivery of care will be performed. Summary The ruby study will be the most comprehensive repository of data, biospecimens, and patient-reported outcomes ever collected with respect to young women with bca from the time of diagnosis, enabling research unique to that population now and into the future. This research model could be used for other oncology settings in Canada.


2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S573-S574
Author(s):  
K Iglay ◽  
D Bennett ◽  
M Kappelman ◽  
S Thai ◽  
M Aldridge ◽  
...  

Abstract Background Rectovaginal fistulas (RVF) and anovaginal fistulas (AVF) in Crohn’s disease (CD) are rare, debilitating conditions that present substantial disease and treatment burdens for women. In this systematic literature review (SLR), articles relating to the epidemiology and burden of CD-related RVF and AVF were assessed in order to summarize evidence from observational studies and highlight knowledge gaps. Methods Articles published in the past 10 years in PubMed and Embase that provide data on incidence, prevalence and insight into the patient experience and disease burden of CD-related RVF and AVF (PROSPERO registration number CRD42020177732) were identified. Two trained reviewers used pre-specified eligibility criteria to identify studies for inclusion and evaluate risk of bias using the Risk Of Bias In Non-randomized Studies of Interventions (ROBINS-I) tool for observational studies. Data were extracted for a range of variables, including study type and design, population, outcomes and limitations. Results Of the 582 records identified, 316 full-text articles were assessed, and 16 studies that met a priori eligibility criteria were included (Figure). Three epidemiology studies were identified, with one study estimating the prevalence of RVF to be 2.3% in women with CD. No studies relating to the incidence or prevalence of AVF were identified. Seven of 12 treatment-pattern studies reported that patients had or required additional procedures before and/or after the intervention of interest, demonstrating substantial treatment burden. Of the nine studies that reported healing/success across multiple surgical types, rates ranged from 14.4% to 81.0%. In the seven studies that assessed clinical outcomes, healing rates were in the range 50–75%, with varying estimates dependent on population and intervention. Two studies reported recurrence rates of 13.3–55.8% across multiple surgical interventions. Patient-reported outcomes obtained using standardized measures were reported in only one of the 16 studies and were limited to overall health related quality of life, faecal incontinence-related quality of life and female sexual function index. None of the 16 studies included reported healthcare-resource utilization in this patient population. Conclusion This SLR shows the high disease and treatment burdens of RVF and AVF in patients with CD and identifies multiple evidence gaps in this field. The published literature lacks robust, generalizable data and demonstrates a compelling need for substantial novel research into these rare and debilitating sequelae of CD. Sponsor: Takeda Pharmaceuticals USA, Inc.


1992 ◽  
Vol 338 (1285) ◽  
pp. 329-334

The purpose of this contribution is to summarize the papers and discussions, to bring out the highlights, and to focus on outstanding problems and uncertainties. Sixteen years ago Sir Vivian Fuchs and I organized a similar meeting on research in the Antarctic. Since then there has been an explosion of interest in all branches of environm ental science in this region. There have been major advances in theory, and improved technology made possible by the rapid development of electronics has made data collection and analysis easier; but above all the difference between the two meetings is in the development of large-scale numerical modelling as a tool. Also there has been an increasing realization of the value of comparisons between the two polar regions, which is brought out by the contributions to this meeting. The meeting has been distinguished by the quality of the science, the clarity of exposition and excellent visual presentations. It is also striking how much crossfertilization between disciplines has occurred


1994 ◽  
Vol 83 (03) ◽  
pp. 135-141 ◽  
Author(s):  
P. Fisher ◽  
R. Van Haselen

AbstractLarge scale data collection combined with modern information technology is a powerful tool to evaluate the efficacy and safety of homoeopathy. It also has great potential to improve homoeopathic practice. Data collection has not been widely used in homoeopathy. This appears to be due to the clumsiness sof the methodology and the perception that it is of little value to daily practice. 3 protocols addressing different aspects of this issue are presented.- A proposal to establish common basic data collection methodology for homoeopaths throughout Europe.- A systematic survey of the results of homoeopathic treatment of patients with rheumatoid arthritis using quality of life and objective assessments.- Verification of a set of homoeopathic prescribing features for Rhus toxicodendron.These proposals are designed to be ‘user-friendly’ and to provide practical information relevant to daily homoeopathic practice.


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