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The Power and Promise of Cancer Research: Presented at ASCO Annual Meeting 2018
 
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On June 2, 2018, National Cancer Institute (NCI) Director Norman E. Sharpless, M.D. presented at the 2018 American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, Illinois regarding the power and promise of cancer research. He discussed his four key focus areas which are Basic Science, Workforce, Big Data and Clinical Trials. #ASCO18 https://www.cancer.gov/about-nci/leadership/director/presentations/sharpless-asco-2018
Просмотров: 1972 National Cancer Institute
HLS Library Book Talk: "Big Data, Health Law, and Bioethics"
 
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On Wednesday Sept. 12, the Harvard Law School Library hosted a book talk and discussion in celebration of the recent publication of "Big Data, Health Law, and Bioethics," edited by I. Glenn Cohen, Holly Fernandez Lynch, Urs Gasser, and Effy Vayena. The talk was co-sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics and by the Berkman Klein Center for Internet & Society at Harvard University.
Просмотров: 586 Harvard Law School
FDA Sentinel Initiative
 
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The Sentinel System enables FDA to actively query diverse automated healthcare data holders—like electronic health record systems, administrative and insurance claims databases, and registries—to evaluate possible medical product safety issues quickly and securely. - Transforming how FDA monitors the safety of FDA-regulated products. Other Useful Information - http://www.fdaguidance.net - http://www.fdadoctor.com - http://www.passfda.com
Просмотров: 227 FDA Consultant
Tissue + Technology: The Power of Data - Peter Embi, MD
 
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The CCTS presented “Tools of the Trade: Conducting Research with Biorepositories.” Faculty and staff from OSU and Nationwide Children’s Hospital talked about the Biorepository resources that are available for research. Researchers told their stories, and attendees learned about IRB issues, best practices, costs, and resources to help get started when conducting this type of research.
Просмотров: 244 OhioStateCCTS
NYU CHIBI Dr Waitman Advancing Informatics Research thru Alignment w Clinical... 2013 03 08
 
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Advancing Clinical, Translational, and Biomedical Informatics Research through Alignment with Clinical and Translational Science and Cancer Center Aspirations. The University of Kansas Medical Center's (KUMC) decision to pursue a National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA) in partnership with other regional academic medical centers, universities, and health systems catalyzed the development of informatics capabilities to support translational research for the region. These capabilities were also aligned in support of the medical center's top strategic goal: obtaining National Center Institute Cancer Center designation. The core focus has been establishing a team to advance open source systems that link and repurpose clinical and translational data sources for research such as the Epic electronic medical record, the University Health Systems Consortium clinical database, the tumor registry, billing systems, biospecimens, local REDCap registries, and the national social security death index. Medical informatics is now extending these tools to allow streamlined preliminary analysis by investigators while protecting patient confidentiality, engaging the community in clinical research, and leveraging Google's deployment of gigabit fiber to the home for improved health and well being.
Просмотров: 105 nyuinformatics
i2b2: Managing the Mass of Measures: Real People's Real Data Made Useful
 
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Visit: http://geneticalliance.org/events/webinars/standardsandtoolsseries for upcoming webinars to attend live! i2b2 Webinar, is part of a larger series, Managing the Mass of Measures: Real People's Real Data Made Useful, hosted by Genetic Alliance. i2b2 (Informatics for Integrating Biology and the Bedside) is an NIH-funded National Center for Biomedical Computing based at Partners HealthCare System. The i2b2 Center is developing a scalable informatics framework that will enable clinical researchers to use existing clinical data for discovery research and, when combined with IRB-approved genomic data, facilitate the design of targeted therapies for individual patients with diseases having genetic origins. This platform currently enjoys wide international adoption by the CTSA network, academic health centers, and industry. Presenters: Paul Avillach, MD, PhD Research Associate, Center for Biomedical Informatics, Harvard Medical School Assistant Professor, Paris Descartes University, Paris, France Scientific Researcher, Medical Informatics, Erasmus University, The Netherlands Isaac ("Zak") Kohane, MD, PhD Professor, Harvard Medical School Center for Biomedical Informatics Shawn Murphy, MD, PhD Associate Director, Laboratory of Computer Science (LCS) Assistant Professor of Neurology, Harvard Medical School About Managing the Mass of Measures: Real People's Real Data Made Useful: The structure and language of health information often reflects the reason it was captured -- whether medical records, patient built questionnaires, research registries, wearable devices, clinical trials. When, as a society and a globe, we try to use this information to advance a health agenda, we discover many barriers. These include a lack of: interoperability, standardization, liquidity, quality, clarity of intended purpose, and many other challenges. Creative organizations and individuals are creating solutions to accelerate the use of our health information in a digital world. This webinar series will examine the plethora of tools and resources available to make use of health-related data. Throughout the series we will examine standards, common data elements, validated instruments, algorithms, queries and methods for small and large data. Opportunities and challenges will be identified throughout the series. Goals of the series: Enable participant-powered research networks to engage in translational research Educate researchers about new and renewed tools Network researchers, clinicians, and participants through these diverse introductions to quality tools Advance ideas about health related information and data to improve health Provide feedback to the tool-makers so that we alleviate unmet medical needs As is our usual practice, Genetic Alliance will archive these webinars as part of our service to the boarder community, and specifically to educate condition-specific advocacy organizations. These webinars become part of our Navigating the Ecosystem of Translational Science Toolbox. If you know about a resource or tool that you would like to learn more about, or you see an important resource missing from our lineup, please email Jeff Thomas (jthomas@geneticalliance.org)
Просмотров: 1593 Genetic Alliance
Improving Trial Accrual by Engaging the Digital Healthcare Consumer
 
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Clinical trials are unable to answer important treatment questions, often due to the inability to recruit patient participants. Recent data suggests nearly 50% of cancer clinical trials close early due to lack of accrual. Trailblazing physicians like Dr. BJ Rimel of Cedars-Sinai Medical Center show us innovative ways to use technology to help. Dr. Rimel and the Women’s Cancer Program at Cedars-Sinai Medical Center have increased trial accrual by implementing an online registry to link participants to research studies. The online registry increased accrual by nearly 5x over the past year by digitizing and simplifying a previously cumbersome, paper-based process. Learn how using e-consents and social marketing improved patient engagement and enrollment in the Research for Her online registry, helping physicians engage a broader population and advance research while saving time and reducing costs. View Research for Her in action and learn how your organization can improve enrollment with DocuSign’s consumer and mobile-friendly digital transaction management platform. This session is geared towards CIOs, CMIOs, researchers, physicians, health IT leaders, and IRB or executive board members of hospitals and medical systems. Attendees of this webinar will be able to: 1. Improve trial accrual and research results using an e-consent process 2. Leverage social media to drive patient enrollment 3. Reach the mobile, digital healthcare consumer 4. Simplify workflows and reduce costly, error prone processes
Просмотров: 175 HIStalk Webinars
Data Governance Talking Points: Simple Lessons From the Trenches
 
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About 7 months ago, one of Health Catalyst's clients asked for a 90-minute cram course on data governance, including time for questions and answers. They were struggling, like so many other healthcare organizations, caught in the swing of extremes from too much to too little, while equilibrium eluded them. With a last-minute rush, Dale Sanders (President of Technology, Health Catalyst) fell back on his time in the Air Force and threw together a talking points paper to facilitate the conversation. At the end of the meeting, the client was effusive with their appreciation, using words like “incredibly insightful,” “brilliant,” and “hugely valuable.” Dale didn’t think it was that good, but their data governance function was “dramatically better,” and they were happy, so something worked.
Просмотров: 56 Health Catalyst
Bioinformatics and Biospecimen Workshop 2013 - Overview of The Cancer Genome Atlas by Jay Bowen
 
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A brief overview and introduction of TCGA, tumor eligibility criteria and tumor study types. Description of the TCGA molecular platforms, institutions participating in the TCGA network, clinical data process, and data standardization procedures. Overview of TCGA, what constitutes the public access versus controlled access data and data portal. TCGA publication policy was presented, as well as how to access the data and steps on participation with TCGA.
Просмотров: 1433 nmsuaces
Next in Science: Epidemiology | Part 2 || Radcliffe Institute
 
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The "Next in Science" series provides an opportunity for early-career scientists whose innovative, cross-disciplinary research is thematically linked to introduce their work to one another, to fellow scientists, and to nonspecialists from Harvard and the greater Boston area. (2:05) “The Role of Epidemiologists in Studying the Causes and Consequences of Neuropsychiatric Health” Sonja Swanson, assistant professor, Department of Epidemiology, Erasmus MC University Medical Center Rotterdam (21:13) “Finding Opportunities to Reduce Disparities” John W. Jackson, assistant professor, Departments of Epidemiology and Mental Health, Johns Hopkins Bloomberg School of Public Health (51:37) Q&A
Просмотров: 2111 Harvard University
Public Workshop: Safety Assessment for Investigational New Drug Reporting
 
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This public workshop, convened under a cooperative agreement with the Food and Drug Administration, is being held in response to public comments received on the draft guidance “Safety Assessment for IND Safety Reporting” issued in December 2015 requesting a public meeting to discuss the draft guidance and its implications. Broadly, this workshop will provide an opportunity for the stakeholder community to continue discussions around key challenges related to IND reporting practices proposed in the guidance. Sessions will highlight industry experience implementing these approaches, and discussion topics will include but not limited to safety assessment and aggregate analysis, as well as potential best practices for unblinding of data and trial integrity, identifying expected/anticipated events, and determining reporting thresholds.
Просмотров: 905 Duke Margolis
HHS Final Rule and NIH Policy on Clinical Trials Reporting – Dr. Francis Collins, NIH
 
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In an effort to make information about clinical trials widely available to the public, the U.S. Department of Health and Human Services today issued a final rule that specifies requirements for registering certain clinical trials and submitting summary results information to ClinicalTrials.gov. The new rule expands the legal requirements for submitting registration and results information for clinical trials involving U.S. Food and Drug Administration (FDA)-regulated drug, biological and device products. Dr. Francis Collins, Director of the National Institutes of Health, talks about NIH issuing a complementary policy for registering and submitting summary results information to ClinicalTrials.gov for all NIH-funded trials, including those not subject to the final rule.
Просмотров: 4293 NIHOD
Biobank consent models – Video abstract 64577
 
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Video abstract of review paper “Biobank consent models – toward widening public participation in biobanking?” published in the Journal of Biorepository Science for Applied Medicine by Solberg B, Steinsbekk KS. Engagement, involvement, and active participation are buzzwords used in today’s ethical debate on research biobanking. There are a variety of context-sensitive governance frameworks for research biobanks. However, many biobanks, especially large-scale population-based ones, seem to endorse a framework of broad consent, participation with minimal or no ongoing engagement, and no return of results. An alternative vision of involvement and active participation in this type of research has become increasingly visible in the literature. The problem, seen from the biobankers’ perspective, is that the alternative vision might be costly, cumbersome, and risky, while the prevailing system for governance will maximize the scientific value of the biobank with minimal ethical, legal, and social efforts. Therefore, solid and convincing arguments are needed to determine if biobank institutions should take a radical step toward more ongoing engagement and donor involvement. In this paper, we review the arguments found in articles addressing dynamic consent, participatory research, reciprocity, and participant engagement in biobank research. We identify four core ideas on which the arguments for increased involvement are based. The strength of the arguments are then analyzed. We conclude that despite challenges with increased engagement, there seem to be substantial reasons to increase participant engagement in biobanking. Read the review paper here: http://www.dovepress.com/dendrimer-coupled-sonophoresis-mediated-transdermal-drug-delivery-syst-peer-reviewed-article-DDDT
Просмотров: 100 Dove Medical Press
Registries and Universal Screenings: Opportunities and Challenges in Various Settings
 
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In this presentation during the February 2017 Workshop on Approaches to Blue Ribbon Panel Recommendations: The Case of Lynch Syndrome, Dr. Nancy Baxter, Dr. Noralane Lindor, Dr. Mark Jenkins, Dr. Debra Duquette, Dr. Heather Hampel, Dr. Jessica Ezzell Hunter, and Dr. Karen Lu discuss registries and universal screening, along with questions and comments from the audience. Learn more about this Workshop at https://cancercontrol.cancer.gov/lynch-syndrome-workshop/
Просмотров: 101 NCIwebinars
Dana E. Rollison, Ph.D. - MyMoffitt Portal: Giving Data Back to Participants
 
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The webinar focused on Moffitt's electronic patient questionnaire (EPQ), the patient clinical intake form that includes modules on demographics, past medical history, review of systems, family medical history, medication history, smoking history, reproductive history, alcohol consumption, physical activity, diet, baseline quality of life, and use of complimentary and alternative medicine. Patients complete the EPQ via Moffitt's online patient portal. Their responses are summarized in an 'MD summary report' which is incorporated into the electronic medical record, while the discrete responses to each questions are propagated through to Moffitt's enterprise wide data warehouse. The webinar included an overview of the questionnaire content, completion rates, usage statistics, and examples of studies that have leveraged EPQ data to answer a variety of research questions. http://epi.grants.cancer.gov/events/TEAM/index.html#tools
Просмотров: 230 National Cancer Institute
Biobanking & Future Research: Addressing the "Unknown" in the Protocol and Consent
 
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Quorum Review presents a special webinar with J. Claire Carbary, JD, CIP to discuss IRB expectations with biobanking and future research. The presenter outlines U.S. and Canadian regulations and laws related to this type of research, and concerns about communicating possible results to study participants.
Просмотров: 973 Quorum Review- Independent Review Board
Why You Should Visit ClinicalTrials.gov ASAP!
 
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The importance of using reliable and latest research when studying health and life sciences is constantly stressed to academia -- especially to students. However, one aspect that has often been overlooked is that peer-reviewed journal articles are only available at a period after the researchers have compiled their work into a written report. ClinicalTrials.gov gives researchers (students, teachers, and health practitioners alike) a look at cutting-edge research -- as it happens! The website is a registry and results database of clinical studies of human participants conducted around the world. This video examines it's significance, and simplifies it's use for first time viewers. This video was made by 4DM3 student Anser Daud. Please let us how you like this video and if you have any suggestions to how we can improve our videos. Copyright McMaster University 2016.
Просмотров: 207 Demystifying Medicine
Guiding Principles for Clinical Trial Data Sharing
 
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Susan Bull, The Ethox Centre, University of Oxford
Просмотров: 36 NASEM Health and Medicine Division
HIV and Beyond: The Benefits of HIV Research
 
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On December 1, 2017, the NIH Office of AIDS Research hosted a World AIDS Day forum titled HIV and Beyond: The Benefits of HIV Research. People from across NIH and the community gathered to listen to speakers representing several NIH institutes discuss the impact of HIV research across scientific disciplines, including hepatitis C, cardiovascular disease, behavioral and social sciences, effective anti-leukemia therapy, and organ transplantation. Speakers included Maureen Goodenow, Ph.D., NIH Associate Director for AIDS Research and Director of OAR; Sarah Kattakuzhy M.D. of the NIH Clinical Center; Patrice Desvigne-Nickens M.D. from the National Heart, Lung, and Blood Institute; Dianne Rausch, Ph.D., of the National Institute of Mental Health; Nirali Shah M.D., M.H.Sc. from the National Cancer Institute, and Jonah Odim, M.D., Ph.D. of the National Institute of Allergy and Infectious Diseases.
Просмотров: 877 NIHOD
ClinicalTrials.gov: Results Reporting, Unique Evidence & the Role of the Medical Librarian
 
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August 27, 2018 Sponsored by NNLM MAR ClinicalTrials.gov is the openly available federal registry and results database of publicly and privately funded clinical studies conducted in the United States and around the world. ClinicalTrials.gov is a vital resource for researchers, healthcare providers, and health sciences librarians who wish to consult the entire body of evidence on any particular topic. This one hour webinar introduces the significance of ClinicalTrials.gov, teaches participants how to search and interpret the results database, and shares how librarians can advocate to researchers the importance of complying with federal results submission requirements. The National Network of Libraries of Medicine is funded by the National Library of Medicine, National Institutes of Health, Department of Health and Human Services. Learn more at https://nnlm.gov
The Kentucky Research Registry and Specimen Bank: Investigator Q&A
 
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The Kentucky Research Registry and Specimen Bank, also known as the Biobank, a resource at the Center for Clinical and Translational Science (CCTS), provides University of Kentucky investigators with human tissue samples for research. Produced by Research Communications at the University of Kentucky.
Просмотров: 148 University of Kentucky
Clinical Trials 101
 
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Clinical trials are research studies that involve people and test new ways to prevent, detect, diagnose, or treat cancer and other diseases. At the conclusion of this webinar, you will be able to demonstrate a basic understanding of the basics of clinical trials, including how they work, protections for participants and factors related to participation.
Просмотров: 4256 NCIwebinars
The Lancet Oncology Commission: Future Cancer Research Priorities in the USA — Part 2
 
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The Lancet Oncology Commission: Future Cancer Research Priorities in the USA — Part 2 Top scientists discuss how they recommend expanding and implementing the Blue Ribbon Panel’s road map for cancer research. They’ll discuss a report that will be published by the journal The Lancet Oncology and is co-edited by Elizabeth Jaffee, M.D., deputy director of the Johns Hopkins Kimmel Cancer Center, and Chi Van Dang, M.D., Ph.D., scientific director at Ludwig Cancer Research and professor at The Wistar Institute. Visit Johns Hopkins inHealth at: https://www.hopkinsmedicine.org/inhealth
Просмотров: 134 Johns Hopkins Medicine
A Culture Shift Toward Openness and Reproducibility in Psychology with Brian Nosek, PhD
 
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Watch the APA livestream "A Culture Shift Toward Openness and Reproducibility in Psychology" filmed on Wednesday, Oct. 25 at 7:00 pm ET with Brian Nosek, PhD, co-founder and executive director of the Center for Open Science, which operates the Open Science Framework that enables open and reproducible research practices worldwide. Nosek is a professor in the department of psychology at the University of Virginia. He co-founded Project Implicit, a multiuniversity collaboration for research and education investigating implicit cognition – thoughts and feelings that occur outside of awareness or control. Nosek investigates the gap between values and practices, such as when behavior is influenced by factors other than one's intentions and goals. Research applications of this interest include implicit bias, decision-making, attitudes, ideology, morality, innovation, barriers to change, open science and reproducibility. In 2015, he was named on of Nature’s 10 and to the Chronicle of Higher Education Influence list. He received his PhD from Yale University in 2002. This is the fourth in a series of talks being presented by the American Psychological Association to mark its 125th anniversary in 2017. __ The American Psychological Association is the leading scientific and professional organization representing psychology in the United States, with more than 115,700 researchers, educators, clinicians, consultants and students as its members. To learn more about the APA visit http://www.apa.org Follow APA on social media: Facebook https://www.facebook.com/AmericanPsychologicalAssociation/ Twitter https://twitter.com/apa LinkedIn https://www.linkedin.com/company/10738/ Google+ https://plus.google.com/+americanpsychologicalassociation
Просмотров: 568 American Psychological Association
DatStat Overview
 
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Dr. Lizza Miller, CEO and co-founder, provides her overview of DatStat software and services for patient care, clinical trials, and academic research. Leading organizations use DatStat for: Patient care and health research; Academic and social science research; Corporate, government, and non-profit studies; and research at NCI-Designated Cancer Centers. DatStat powers data capture for: FDA-regulated clinical trials; eCRFs; Patient Data Capture; Patient Reported Outcomes (PROs); Patient registries; Quality of care/Quality of life; Interventions and RCTs; Longitudinal studies; Patient/staff feedback DatStat solves these challenges: Inefficiencies and inaccuracies in data; Low response rates/loss to follow-up; Delayed access to data; Security concerns; Lack of standardization, including Complex, unstructured monitoring, including Protocol deviations and errors; and Project management and staffing costs Conclusion: DatStat has used an innovative vision to create unbelievable software for data collection and research management. Our world-class and worldwide client base uses these tools in conjunction with our expert services to power research and improve patient care in ways that simply weren't possible before.
Просмотров: 193 DatStat
Translating Electronic Data Into Better Quality Care: A National Web Conference
 
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This session reviewed three AHRQ-funded projects that provide the following: a) a review and synthesis of lessons of a long-standing research network to look for themes and hypotheses about factors that improve the quality of care through the use of EMRs, b) research related to the impact of an EHR implementation supported by interventions related to technical assistance and additional decision support tools on achieving improvements in quality measures, and c) an overview of a plan to collect and report quality measures for the Pediatric Emergency Care Applied Research Network (PECARN) using EHR data. Also available at http://healthit.ahrq.gov/events/national-web-conference-translating-electronic-data-better-quality-care
Просмотров: 350 AHRQ Health IT
IPPCR 2015: Module I Summary and Study Examples
 
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Introduction to the Principles and Practice of Clinical Research (IPPCR) 2015: Module I Summary and Study Examples Air date: Monday, December 14, 2015, 5:00:00 PM Category: IPPCR Runtime: 01:30:40 Description: The Introduction to the Principles and Practice of Clinical Research (IPPCR) is a course to train participants on how to effectively conduct clinical research. The course focuses on the spectrum of clinical research and the research process by highlighting epidemiologic methods, study design, protocol preparation, patient monitoring, quality assurance, and Food and Drug Administration (FDA) issues. For more information go to http://clinicalcenter.nih.gov/training/training/ippcr1.html Author: Laura Lee Johnson, Ph.D., FDA Permanent link: http://videocast.nih.gov/launch.asp?19387
Просмотров: 2099 nihvcast
Overcoming Barriers to Large-scale Biomedical Data Use
 
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In this AllerGen webinar, presented April 9, 2018, the presenter--Dr. Eric Perakslis--discusses challenges to realizing the rich promise of collaborative data science, and strategies to overcome them.
Просмотров: 51 AllerGen NCE
Roberto Lucchini, MD - Post-9/11 Cancer Among WTC General Responders Consortium - Research to Care
 
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Presented at the Research to Care Community Engagement Event on October 21st, 2017 at NYU Langone Medical Center. Fact sheet and transcript available at https://wwwn.cdc.gov/ResearchGateway/R2C#lucchini Dr. Lucchini is a Professor of Environmental Medicine and Public Health, and a Professor of Medicine, Pulmonary, Critical Care and Sleep Medicine at Icahn School of Medicine at Mount Sinai.
Просмотров: 21 World Trade Center Health Program
The Center for Expanded Data Annotation and Retrieval
 
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On Sept. 13, 2017, Mark Musen, M.D., Ph.D., presented "The Center for Expanded Data Annotation and Retrieval" to the CBIIT Speaker Series. https://wiki.nci.nih.gov/display/CBIITSpeakers/CBIIT+Speaker+Series+Page
Просмотров: 136 NCIwebinars
Dr. Jack Welch: Cancer Drug and Clinical Trial Development in Low and Middle Income Countries
 
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Dr. Jack Welch will discuss cancer drug development in the U.S., NCI's infrastructural role in U.S. clinical trials, international collaborations, and NCI trials in resource-constrained settings. NCI's Center for Global Health will be including additional lectures that are geared towards international participants, especially those from low-and middle-income countries, with the goal of providing information and tools that can be used for cancer prevention and control in their home countries. The additional lectures will be presented by subject matter experts from NCI, other cancer centers and public and private organizations. To learn more, please visit http://www.cancer.gov/aboutnci/globalhealth/events.
Просмотров: 237 National Cancer Institute
Get to Know PCORI
 
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Dr. Joe Selby, Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), presents to faculty and staff at UCSF on October 2, 2017.
Просмотров: 107 UC San Francisco (UCSF)
NHLBI  ICTR Webinar #1, An introduction and overview of innovative trial design
 
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In our first ICTR webinar, Kert Viele will review the value of the main components of a gold standard randomized clinical trial and review a variety of innovative trial techniques in comparison to the gold standard. For each innovative technique, he will discuss the potential advantage and disadvantages of the method in comparison to a standard clinical trial, illustrating the tradeoffs to be considered when adopting innovative clinical trials. Innovative trial designs to be discussed include flexible sample sizes, enrichment, the utilization of historical information, multiple arm and multiple domain trials, and novel endpoints. Find more at http://innovativeclinicaltrial.org/ This video has been funded in whole or in part with Federal funds from the National Heart, Lung, andBlood Institute, National Institutes of Health, Department of Health and Human Services, under Contract No.HHSN268201800008I
Просмотров: 107 Berry Consultants
ClinAction Workshop: AHRQ's Perspective on Clinical Utility of Genomics - Gurvaneet Randhawa
 
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Characterizing and Displaying Genetic Variants for Clinical Action Workshop December 1-2, 2011 More: http://www.genome.gov/27546546
Просмотров: 350 National Human Genome Research Institute
Reducing infection in the outpatient dialysis facility
 
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Results of the Standardizing Care to Improve Outcomes in Pediatric End stage renal disease (SCOPE) Collaborative. This presentation includes a discussion of results of the Standardizing Care to Improve Outcomes in Pediatric End stage renal disease (SCOPE) Collaborative, which is a Quality Transformation Network for dialysis centers serving children. The webinar concludes with a question and answer session between participants and the subject matter experts in the field. Comments on this video are allowed in accordance with our comment policy: http://www.cdc.gov/SocialMedia/Tools/CommentPolicy.html This video can also be viewed at https://www.cdc.gov/infectioncontrol/webinars/MDS-274244/Making_Dialysis_Safer_Webinar-lowres.mp4
Introducing NIH Person-Centered Outcome Tools
 
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Introducing NIH Person-Centered Outcome Tools Air date: Thursday, April 03, 2014, 8:30:00 AM Category: Conferences Runtime: 03:30:50 Description: As a result of growing interest from the National Institutes of Health Clinical Center (CC) and Intramural Research Program (IRP), we are pleased to announce that the NIH-funded tools, including the Patient Reported Outcomes Measurement Information System (PROMIS), the NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox), and Quality of LIfe in Nuerological Disorders (Neuro-QOL) are now available on campus! Single-sign-on versions of these tools, compliant with the Federal Information Security Management Act, have been created for secure use behind the NIH firewall. Investigators at the CC and IRP will now be able to easily access PROMIS, the NIH Toolbox, and Neuro-QOL for patient care, clinical research, and clinical interventions/trials. For more information go to http://nihpromis.org Author: NIH Permanent link: http://videocast.nih.gov/launch.asp?18368
Просмотров: 3118 nihvcast
How will I find out about the results of a clinical trial?
 
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Physicians discuss how patients can find out the results of a clinical trial that they participated in. They also explain that the individual patient information is always kept confidential and results are presented for the larger group of patients. Clinical trial results can be made available to the general public and patients in a number of ways, such as at big scientific meetings. The goal is to let as many people know as possible and to enhance knowledge sharing amongst the oncology research community to stimulate further ideas and clinical trials. Announcing results often happens when clinical trials are completed and an update will be put on the clinicaltrials.gov website. There may also be journal publications to further share the results and conclusions of the study. Occasionally a study will reach an end point and researchers may have to close the study early. In that context, they will inform the patients as they come into the clinic or send a letter to the patients involved in the clinical trial. As for patient privacy and medical information, patients will sign a disclosure that acknowledges that the study team of physicians, nurses, and data managers that are looking after them will have access to their information, however individual information is never shared outside the trial without patient consent. Often the institutional review board (IRB) will have oversight, as well as the company or agency that's funding the trial. The Federal Drug Authority (FDA) can also have access to the information. Certain collaborating sites may also have access to the patient’s information if they are involved in some of the other scientific aspects of the clinical trial. For example, if a patient's research specimens are going to a lab in another part of the country, they will need to list that lab and the principal investigator that will be responsible for those specimens or samples. All of this information should be provided up front to patients and is part of the informed consent process. There are a lot of safety measures in place to protect confidential (also called “Privileged”) information as much as possible. To learn more visit: http://www.AnimatedPancreasPatient.com
Просмотров: 41 ThePancreasPatient
ClinicalTrials.gov: Results Reporting, Unique Evidence & the Role of the Medical Librarian
 
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December 7, 2017 Sponsored by NNLM MAR Learn about the significance of ClinicalTrials.gov, the openly available federal registry and results database of publicly and privately funded clinical studies conducted in the United States and around the world. ClinicalTrials.gov is a vital resource for researchers, healthcare providers, and health sciences librarians who wish to consult the entire body of evidence on any particular topic. The National Network of Libraries of Medicine is funded by the National Library of Medicine, National Institutes of Health, Department of Health and Human Services. Learn more at https://nnlm.gov
Surveillance of Vaccine-Preventable Diseases
 
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Current Guidelines for Surveillance of Vaccine-Preventable Diseases Comments on this video are allowed in accordance with our comment policy: http://www.cdc.gov/SocialMedia/Tools/CommentPolicy.html This video can also be viewed at http://ftp.cdc.gov/pub/VACCINES2/ed/Surveillance_2012_update_lowres.mov
The Complementarity of Comparative Effectiveness Research and Precision Medicine - Joe Selby
 
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September 21, 2015 - National Advisory Council for Human Genome Research More: http://www.genome.gov/27562458
Просмотров: 231 National Human Genome Research Institute
Director's Report (May 2016) - Eric Green
 
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May 16, 2016 - National Advisory Council for Human Genome Research More: https://www.genome.gov/27564922/
Просмотров: 266 National Human Genome Research Institute
NPRM Town Hall Meeting Part 1: Overview & Panel
 
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Public Town Hall Meeting on the Federal Policy for the Protection of Human Subjects (Common Rule) Notice of Proposed Rulemaking (NPRM), held October 20, 2015. To learn more, visit http://www.hhs.gov/ohrp/index.html. -- U.S. Department of Health and Human Services (HHS) http://www.hhs.gov We accept comments in the spirit of our comment policy: http://www.hhs.gov/web/socialmedia/policies HHS Privacy Policy http://www.hhs.gov/Privacy.html
The Changing Regulatory Landscape and Genetic Research
 
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This video features Pearl O’Rourke, MD, who is Director of Human Research Affairs at Partners HealthCare Systems and Associate Professor of Pediatrics at Harvard Medical School, giving a plenary speech at an OHRP sponsored RCF in Augusta, GA. She discusses revisions to the Common Rule and other regulations and what these changes might mean for genetic and genomic research in the future. -- U.S. Department of Health and Human Services (HHS) http://www.hhs.gov We accept comments in the spirit of our comment policy: http://www.hhs.gov/web/socialmedia/policies HHS Privacy Policy http://www.hhs.gov/Privacy.html
Innovative Approaches to Clinical Trials
 
01:55:04
Description
Просмотров: 55 NIH ODP
What needs to be done to address these issues? - Wylie Burke and Michael Boehnke
 
02:13:59
June 5-6, 2012 - Establishing a Central Resource of Data from Genome Sequencing Projects Workshop More: http://www.genome.gov/27549169
Просмотров: 705 National Human Genome Research Institute