scholarly journals Pediatric Cancer Data Commons: Federating and Democratizing Data for Childhood Cancer Research

2021 ◽  
pp. 1034-1043
Author(s):  
Alejandro Plana ◽  
Brian Furner ◽  
Monica Palese ◽  
Nicole Dussault ◽  
Suzi Birz ◽  
...  
Keyword(s):  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Research Collaboration ◽  
The United States ◽  
Research Community ◽  
Essential Information ◽  
Cancer Data ◽  
Large Patient ◽  
Patient Consent ◽  
Data Commons

The international pediatric oncology community has a long history of research collaboration. In the United States, the 2019 launch of the Children's Cancer Data Initiative puts the focus on developing a rich and robust data ecosystem for pediatric oncology. In this spirit, we present here our experience in constructing the Pediatric Cancer Data Commons (PCDC) to highlight the significance of this effort in fighting pediatric cancer and improving outcomes and to provide essential information to those creating resources in other disease areas. The University of Chicago's PCDC team has worked with the international research community since 2015 to build data commons for children's cancers. We identified six critical features of successful data commons design and implementation: (1) establish the need for a data commons, (2) develop and deploy the technical infrastructure, (3) establish and implement governance, (4) make the data commons platform easy and intuitive for researchers, (5) socialize the data commons and create working knowledge and expertise in the research community, and (6) plan for longevity and sustainability. Data commons are critical to conducting research on large patient cohorts that will ultimately lead to improved outcomes for children with cancer. There is value in connecting high-quality clinical and phenotype data to external sources of data such as genomic, proteomics, and imaging data. Next steps for the PCDC include creating an informed and invested data-sharing culture, developing sustainable methods of data collection and sharing, standardizing genetic biomarker reporting, incorporating radiologic and molecular analysis data, and building models for electronic patient consent. The methods and processes described here can be extended to any clinical area and provide a blueprint for others wishing to develop similar resources.

scholarly journals Barriers to symptom management care pathway implementation in pediatric Cancer

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
L. Lee Dupuis ◽  
Allison Grimes ◽  
Emily Vettese ◽  
Lisa M. Klesges ◽  
Lillian Sung
Keyword(s):  
Clinical Research ◽  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Symptom Management ◽  
Care Pathway ◽  
The United States ◽  
Care Pathways ◽  
Research Activities ◽  
Pediatric Cancer Patients ◽  
The Impact

Abstract Background Objectives were to describe barriers to pediatric cancer symptom management care pathway implementation and the impact of the COVID-19 pandemic on clinical research evaluating their implementation. Methods We included 25 pediatric oncology hospitals in the United States that supported a grant submission to perform a cluster randomized trial in which the intervention encompassed care pathways for symptom management. A survey was distributed to site principal investigators prior to randomization to measure contextual elements related to care pathway implementation. Questions included the inner setting measures of the Consolidated Framework for Implementation Research (CFIR), study-specific potential barriers and the impact of the COVID-19 pandemic on clinical research. The Wilcoxon rank sum test was used to compare characteristics of institutions that agreed that their department supported the implementation of symptom management care pathways vs. institutions that did not agree. Results Of the 25 sites, one withdrew because of resource constraints and one did not respond, leaving 23 institutions. Among the seven CFIR constructs, the least supported was implementation climate; 57% agreed there was support, 39% agreed there was recognition and 39% agreed there was prioritization for symptom management care pathway implementation at their institution. Most common barriers were lack of person-time to create care pathways and champion their use (35%), lack of interest from physicians (30%) and lack of information technology resources (26%). Most sites reported no negative impact of the COVID-19 pandemic across research activities. Sites with fewer pediatric cancer patients were more likely to agree that staff are supported to implement symptom management care pathways (P = 0.003). Conclusions The most commonly reported barriers to implementation were lack of support, recognition and prioritization. The COVID-19 pandemic may not be a major barrier to clinical research activities in pediatric oncology.

scholarly journals Readiness to Implement Symptom Management Care Pathways in Pediatric Cancer

2020 ◽  
Author(s):  
L Lee Dupuis ◽  
Allison Grimes ◽  
Emily Vettese ◽  
Lisa M. Klesges ◽  
Lillian Sung
Keyword(s):  
Clinical Research ◽  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Symptom Management ◽  
Care Pathway ◽  
The United States ◽  
Care Pathways ◽  
Research Activities ◽  
Pediatric Cancer Patients ◽  
The Impact

Abstract Background: To describe barriers to pediatric cancer symptom management care pathway implementation and the impact of the COVID-19 pandemic on clinical research evaluating their implementation. Methods: We included 25 pediatric oncology hospitals in the United States that supported a grant submission to perform a cluster randomized trial in which the intervention encompassed care pathways for symptom management. A survey was distributed to site principal investigators to measure contextual elements related to care pathway implementation. Questions included the inner setting measures of the Consolidated Framework for Implementation Research (CFIR), study-specific potential barriers and the impact of the COVID-19 pandemic on clinical research. The Wilcoxon rank sum test was used to compare characteristics of institutions that agreed that their department supported the implementation of symptom management care pathways vs. institutions that did not agree.Results: Of the 25 sites, one withdrew because of resource constraints and one did not respond, leaving 23 institutions. Among the seven CFIR constructs, the least supported was implementation climate; 57% agreed there was support, 39% agreed there was recognition and 39% agreed there was prioritization for symptom management care pathway implementation at their institution. Most common barriers were lack of person-time to create care pathways and champion their use (35%), lack of interest from physicians (30%) and lack of information technology resources (26%). Most sites reported no negative impact of the COVID-19 pandemic across research activities. Sites with fewer pediatric cancer patients were more likely to agree that staff are supported to implement symptom management care pathways (P=0.003). Conclusions: The most commonly reported barriers to implementation were lack of support, recognition and prioritization. The COVID-19 pandemic was not a major barrier to clinical research activities in pediatric oncology.Clinical Trial Registration: NCT04614662

scholarly journals Supply Chain Innovation in Scientific Research Collaboration

2019 ◽  
Vol 11 (3) ◽  
pp. 753 ◽  
Author(s):  
Chih-Hung Yuan ◽  
Yenchun Wu ◽  
Kune-muh Tsai
Keyword(s):  
United States ◽  
Supply Chain ◽  
Research Collaboration ◽  
The United States ◽  
Research Community ◽  
Future Research ◽  
Collaborative Network ◽  
Collaboration Networks ◽  
Research Papers ◽  
The United Kingdom

Innovations in supply chains and logistics, which help businesses reduce their costs and meet customer needs, have become increasingly vital. In this study, we first conducted a content analysis followed by a social network analysis to systematically review 104 research papers on supply chain innovation (SCI) that were published between 1987 and 2018. The results suggest that SCI research was originally concentrated in the United States and did not receive much attention in Europe and Asia, until more recently. An analysis of collaboration networks indicates that an SCI research community has just started to form, with the United Kingdom at the center of the international collaborative network. Implications of the study and directions for future research are summarized in detail, based on the systematic literature review.

Guidelines for the Pediatric Cancer Center and Role of Such Centers in Diagnosis and Treatment

PEDIATRICS ◽  
1986 ◽  
Vol 77 (6) ◽  
pp. 916-917
Author(s):  
Keyword(s):  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
The United States ◽  
Diagnosis And Treatment ◽  
Tumor Board ◽  
Cancer Center ◽  
Pediatric Radiologist ◽  
Oncology Patient ◽  
Pediatric Oncology Patient

GUIDELINES FOR PEDIATRIC CANCER CENTERS The pediatric cancer center cannot be defined simply in terms of restriction by diagnosis and age group. It implies a multidisciplinary approach by a team of pediatric, surgical, radiologic, nursing, and paramedical specialists. The care of the pediatric oncology patient should be coordinated by a trained pediatric oncologist in a center that includes the following facilities and capabilities: (1) pediatric oncology nursing care in a specific area; (2) a pediatric intensive care unit; (3) pediatric radiologist and radiologic services that include lung tomography, computed axial tomography, ultrasonography, and angiography; (4) hematopathologic laboratory services capable of doing cell marker studies; (5) laboratories for the routine provision of drug levels; (6) blood cell component therapy; (7) a pharmacy familiar with antineoplastic agents; (8) clinical pharmacology services; (9) protective isolation; (10) personnel familiar with pediatric total parenteral nutrition techniques; (11) radiotherapist familiar with pediatric oncology problems and radiotherapy equipment which includes cobalt-60 or an accelerator with nominal beam energy of 6 meV or greater; (12) rapid section studies and operating room consultation at any time; (13) a multidisciplinary tumor board or its equivalent; (14) surgeons specializing in pediatric oncology; and (15) trained oncology social workers. ROLE OF CENTERS IN DIAGNOSIS AND TREATMENT Each year cancer is discovered in about 6,000 children in the United States. Fifty percent of these cancers are curable when the diagnostic and therapeutic techniques available today are instituted promptly. There are many reasons, some beyond any physician's control, for the failure to realize this potential cure rate, but among recognized factors are late detection, misdiagnosis, and inappropriate treatment.

Turkish National Pediatric Cancer Registry 2002-2008 (Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Society).

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 10067-10067 ◽  
Author(s):  
M. Tezer Kutluk ◽  
Akif Yesilipek ◽  
Keyword(s):  
Childhood Cancer ◽  
Cancer Registry ◽  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Germ Cell Tumors ◽  
Developed Countries ◽  
Renal Tumors ◽  
Cancer Data ◽  
Pediatric Hematology ◽  
Cure Rates

10067 Background: In childhood cancers cure rates increased up to 80% in the developed countries. On the other hand cure rates goes down 10-20% percent in countries with low resource settings. Reliable pediatric cancer data is essential for all countries. We established a nationwide pediatric cancer registry. Methods: Turkish Pediatric Oncology & Pediatric Hematology Society established a web-based database for the registry of all pediatric cancers. 11898 cases were registered between 2002-2008 from 65 centers. Various demographic data & survival endpoints were recorded & analyzed. Diseases were grouped according to the International Classification of Childhood Cancer. Results: In all 11898 cases, median age was 6 years (M/F= 6786/5112=1.32). Distribution in age groups were: 0-4 years, 42.5%; 5-9 years, 27.2%; 10-14 years, 23.4%; 15-19 years, 6.8%; >19 years, 0.1%. Only 3.8% of cases were diagnosed with clinical+radiological, the rest with histopathological data Distribution of cases in disease groups were [median age in yrs, M/F]: Leukemias (n=3777) 31.7% [5.5, 2137/1640=.31]; Lymphomas (n=2040) 17.1% [8.3, 1405/635=2.21]; CNS tumors (n=1588) 13.3% [6.9, 913/675=1.3 ]; Sympathetic tumors (n=889) 7.5% [2.1, 453/436=1.03]; Retinoblastoma (n=371) 3.1% [2, 181/190=0.95]; Renal tumors (n=655) 5.5% [3, 333/322=1.03]; Hepatic (n=166) 1.4% [1.8, 101/65=1.5]; Bone tumors (n=717) 6% [12.2, 407/310=1.3]; Soft tissue tumors (n=773) 6.5% [6.5, 442/331=1.3]; Germ cell tumors (n=531) 4.5% [5, 210/321=0.6 ]; Carcinomas and other malignant epithelial tumors (n=323) 2.7% [12, 164/159=1.03]; Others/unspecified malignant tumors (n=68) 0.6% [4.5, 40/28=1.4]. Five-year overall survival in all cases was 65%. Conclusions: This registry provides a critical information about the distribution of childhood cancer since this is the only nationwide pediatric cancer registry in Turkey. With the recent trends in non-communicable diseases at global level, registry data will be very helpful for national cancer control plans, which will also be used to compare at national and international level. This will also be a good example for many other countries with similar resources to do such projects.

scholarly journals Outcomes for Children and Adolescents With Cancer: Challenges for the Twenty-First Century

2010 ◽  
Vol 28 (15) ◽  
pp. 2625-2634 ◽  
Author(s):  
Malcolm A. Smith ◽  
Nita L. Seibel ◽  
Sean F. Altekruse ◽  
Lynn A.G. Ries ◽  
Danielle L. Melbert ◽  
...  
Keyword(s):  
United States ◽  
Childhood Cancer ◽  
Cancer Mortality ◽  
Lymphoblastic Leukemia ◽  
The United States ◽  
Mortality Rates ◽  
Mortality Data ◽  
Childhood Cancers ◽  
Essential Information ◽  
The Impact

Purpose This report provides an overview of current childhood cancer statistics to facilitate analysis of the impact of past research discoveries on outcome and provide essential information for prioritizing future research directions. Methods Incidence and survival data for childhood cancers came from the Surveillance, Epidemiology, and End Results 9 (SEER 9) registries, and mortality data were based on deaths in the United States that were reported by states to the Centers for Disease Control and Prevention by underlying cause. Results Childhood cancer incidence rates increased significantly from 1975 through 2006, with increasing rates for acute lymphoblastic leukemia being most notable. Childhood cancer mortality rates declined by more than 50% between 1975 and 2006. For leukemias and lymphomas, significantly decreasing mortality rates were observed throughout the 32-year period, though the rate of decline slowed somewhat after 1998. For remaining childhood cancers, significantly decreasing mortality rates were observed from 1975 to 1996, with stable rates from 1996 through 2006. Increased survival rates were observed for all categories of childhood cancers studied, with the extent and temporal pace of the increases varying by diagnosis. Conclusion When 1975 age-specific death rates for children are used as a baseline, approximately 38,000 childhood malignant cancer deaths were averted in the United States from 1975 through 2006 as a result of more effective treatments identified and applied during this period. Continued success in reducing childhood cancer mortality will require new treatment paradigms building on an increased understanding of the molecular processes that promote growth and survival of specific childhood cancers.

Disparities in Patterns of Conventional Versus Stereotactic Body Radiotherapy in the Treatment of Spine Metastasis in the United States

2020 ◽  
pp. 082585972098220
Author(s):  
Ellen Kim ◽  
Shearwood McClelland ◽  
Jerry J. Jaboin ◽  
Albert Attia
Keyword(s):  
United States ◽  
Radiation Therapy ◽  
Private Insurance ◽  
Spinal Metastases ◽  
The United States ◽  
External Beam Radiation ◽  
Beam Radiation ◽  
Cancer Data ◽  
Spine Metastases ◽  
Population Type

Introduction: The improved survival of patients even with metastatic cancer has led to an increase in the incidence of spine metastases, suggesting the need for a more aggressive palliative treatment than conventional external beam radiation therapy (cEBRT). Consequently, spinal stereotactic body radiation therapy (SBRT) has increased in popularity over the past decade. However, there has been no comparison of patterns of usage of cEBRT versus SBRT in the treatment of spinal metastases in the US. Methods: The National Cancer Data Base (NCDB) from 2004-2013 was used for analysis. cEBRT was defined as 30 Gy in 10 fractions, 20 Gy in 5 fractions, or 8 Gy in 1 fraction. SBRT was defined as 25-32 Gy infive5 fractions, 24-32 Gy in 4 fractions, 20-32 Gy in three fractions, 14-32 Gy in 2 fractions, or 14-24 Gy in 1 fraction. Single and multivariable associations between patient demographic and cancer characteristics and type of radiation were performed. Results: From 2004-2013, 23,181 patients with spinal metastases in the United States received cEBRT, while 1,030 received SBRT as part of their first course of treatment. Most patients (88%) received 10 fractions of radiation. Multivariable analysis suggested that non-Medicare or private insurance (adjusted OR 0.4-0.7), African-American race (adjusted OR = 0.8, 95%CI = 0.7-1.0), age 65+ (adjusted OR = 0.8), living in a region with lower population (adjusted OR 0.7), earlier year of diagnosis (OR = 0.9), and receiving treatment in a non-academic/research facility (adjusted OR 0.6) were associated with cEBRT. After controlling for other variables, regional education level was no longer significantly associated with cEBRT. Conclusions: Most patients with spine metastases were treated with cEBRT, usually with 10 fractions. Receipt of SBRT was significantly associated with race, insurance, geography, population, type of treatment facility, and year of diagnosis, even after controlling for other factors. These findings raise questions about disparities in access to and delivery of care that deserve further investigation.

America's Scientific Treasures

2020 ◽  
Author(s):  
Stephen M. Cohen ◽  
Brenda H. Cohen
Keyword(s):  
United States ◽  
National Parks ◽  
Public Transportation ◽  
The United States ◽  
Scientific Interest ◽  
Essential Information ◽  
Travel Guide ◽  
Points Of Interest ◽  
Technological Interest

America’s Scientific Treasures is a comprehensive travel guide, designed for adults, that takes the reader to well-known and lesser-known sites of scientific and technological interest in the United States. The book is divided into nine geographical chapters. Subdivided by states, each chapter is represented by its scientific and technological treasures, including museums, arboretums, zoos, national parks, planetariums, natural or technological points of interest, and the homes of famous scientists. While the book is aimed at adults, many of the sites may also be of interest to teens and younger children. The traveler is provided with essential information, including addresses, telephone numbers, hours of entry, handicapped access, dining facilities, dates open and closed, available public transportation, and websites. Nearly every site included here has been visited by the authors. Although written with scientists in mind, this book is for anyone who likes to travel and visit places of historical and scientific interest. Included are photographs of many sites within each state.

Sign in / Sign up

Export Citation Format

Share Document