The American Association for Cancer Research (AACR) Project Genomics Evidence Neoplasia Information Exchange (GENIE) is an international data-sharing consortium focused on enabling advances in precision oncology through the gathering and sharing of tumor genetic sequencing data linked with clinical data. The project's history, operational structure, lessons learned, and institutional perspectives on participation in the data-sharing consortium are reviewed. Individuals involved with the inception and execution of AACR Project GENIE from each member institution described their experiences and lessons learned. The consortium was conceived in January 2014 and publicly released its first data set in January 2017, which consisted of 18,804 samples from 18,324 patients contributed by the eight founding institutions. Commitment and contributions from many individuals at AACR and the member institutions were crucial to the consortium's success. These individuals filled leadership, project management, informatics, data curation, contracts, ethics, and security roles. Many lessons were learned during the first 3 years of the consortium, including on how to gather, harmonize, and share data; how to make decisions and foster collaboration; and how to set the stage for continued participation and expansion of the consortium. We hope that the lessons shared here will assist new GENIE members as well as others who embark on the journey of forming a genomic data-sharing consortium.
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http://dx.doi.org/10.1200/CCI.17.00083 | DOI Listing |
Intensive Care Med Exp
January 2025
Freie Universität Berlin and Humboldt-Universität Zu Berlin, Department of Anesthesiology and Intensive Care Medicine, Charité-Universitätsmedizin Berlin, Campus Benjamin Franklin, Berlin, Germany.
Purpose: CytoSorb® (CS) adsorbent is a hemoadsorption filter for extracorporeal blood purification often integrated into continuous kidney replacement therapy (CKRT). It is primarily used in critically ill patients with sepsis and related conditions, including cytokine storms and systemic inflammatory responses. Up to now, there is no evidence nor recommendation for the use of CS filters in sepsis (22).
View Article and Find Full Text PDFInt J Behav Nutr Phys Act
January 2025
Sport, Rehabilitation and Exercise Sciences, University of Essex, Essex, CO4 3SQ, UK.
Background: Population-levels of physical activity have remained stagnant for years. Previous approaches to modify behaviour have broadly neglected the importance of whole-systems approaches. Our research aimed to (i) understand, (ii) map, (iii) identify the leverage points, and (iv) develop solutions surrounding participation in physical activity across an English rural county.
View Article and Find Full Text PDFR Soc Open Sci
January 2025
Mathematics Application Consortium for Science and Industry (MACSI), University of Limerick, Limerick, Ireland.
The analysis of social networks enables the understanding of social interactions, polarization of ideas and the spread of information, and therefore plays an important role in society. We use Twitter data-as it is a popular venue for the expression of opinion and dissemination of information-to identify opposing sides of a debate and, importantly, to observe how information spreads between these groups in our current polarized climate. To achieve this, we collected over 688 000 tweets from the Irish Abortion Referendum of 2018 to build a conversation network from users' mentions with sentiment-based homophily.
View Article and Find Full Text PDFPediatrics
January 2025
Complex Care, Division of General Pediatrics, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
Pediatric home health care represents a vital system of care for children with disability and medical complexity, encompassing services provided by family caregivers and nonfamily home health care providers and the use of durable medical equipment and supplies. Home health care is medically necessary for the physiologic health of children with disability and medical complexity and for their participation and function within home, school, and community settings. While the study of pediatric home health care in the United States has increased in the last decade, its research remains primarily methodologically limited to observational studies.
View Article and Find Full Text PDFJ Diabetes Sci Technol
January 2025
Department of Medicine, The University of Chicago, Chicago, IL, USA.
Monogenic diabetes mellitus (MDM) is a group of relatively rare disorders caused by pathogenic variants in key genes that result in hyperglycemia. Lack of identified cases, along with absent data standards, and limited collaboration across institutions have hindered research progress. To address this, the UChicago Monogenic Diabetes Registry (UCMDMR) and UChicago Data for the Common Good (D4CG) created a national consortium of MDM research institutions called the PREcision DIabetes ConsorTium (PREDICT).
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