data repositories

  • Virginia Commonwealth University

    The Mid-Atlantic Twin Registry (MATR) is an organization of twins and their families who are willing to consider taking part in twin-based, health-related research. The MATR welcomes twins of any age, ethnicity, and zygosity (identical or fraternal), as well as higher order multiples such as triplets, quadruplets and quintuplets.

  • CLIC
    This webcast provides an overview of concepts and approaches that hubs may consider in reaching data interoperability.
  • To accelerate translation, researchers need access to a broad range of data from a variety of sources (electronic health records, imaging, genetics, behavioral, etc.). These sources manage and store data differently, which creates the need for standardization. The Informatics Common Metric, which is in its second year, addresses the need to harmonize data across the CTSA Program. This will enhance
  • The webcast provides examples of how data interoperability was used in the N3C program for the COVID-19 pandemic. The first five webcasts are an introduction to informatics, created to build foundational knowledge and to define key terms. We encourage you to watch them in order.
  • N3C Orientation Sessions A & B will now be offered just once-per-month (once for session A and once for session B). Sessions A & B will continue to alternate on a rotating basis. View the N3C Calendar for scheduled days and times. Previously recorded sessions can still be accessed on demand on the N3C Presentations & Webinars page of the website.
  • The N3C article authored by Noha Sharafeldin, MD, PhD, MSc, et al has been published in the Journal of Clinical Oncology. The authors assembled the largest nationally representative cohort of patients with cancer and COVID-19 to date and identified demographic and clinical factors associated with increased all-cause mortality in patients with cancer. See Outcomes of COVID-19 in Patients With
  • National COVID Cohort Collaborative (N3C)
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    University of Nebraska Medical Center
    Kenneth Gersing Director of Informatics Division of Clinical Innovation National Center for Advancing Translational Sciences National Institutes of Health Since 2020, Dr. Gersing has co-led the National COVID Cohort Collaborative (N3C).N3C is a partnership among the NCATS-supported Clinical and Translational Science Awards (CTSA) Program hubs, the National Center for Data to Health (CD2H), and the
  • National COVID Cohort Collaborative (N3C)
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    Center for Data to Health
    Not sure how to go about identifying which patients in the N3C Data Enclave have had COVID-19? Want to get your COVID+ patient counts to match the numbers on the Enclave homepage dashboard? The Enclave Users’ Group (EUG) has been created as a community-focused forum where members can share practical information on techniques, tips, and methods in the N3C Data Enclave. Each session will have one or
  • Penn State CTSI logo
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    Center for Data to Health
    Finding the right dataset can sometimes be a challenge in data science. A new initiative will provide Penn State researchers with access to a trove of COVID-19 data, updated frequently by health care systems around the United States. Penn State faculty can learn how to get access to the database and what data is included at a Data Science Community talk at 1 p.m. on Thursday, April 15. Advance
  • The month of April marks the one-year anniversary for the creation of the National COVID Cohort Collaborative (N3C) infrastructure. The N3C was built in just a few short months and is a testament to the dedication of the informatics community to fight the pandemic. The N3C mobilized the expertise of the community to create a national data repository, and was able to open the Enclave to the general
  • National COVID Cohort Collaborative (N3C)
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    Center for Data to Health
    Are your analyses running slower than you’d like, now that N3C is host to over 5 billion rows of data? In this webinar Saad Ljazouli of Palantir will cover a variety of techniques to keep your analyses running smoothly, ranging from tips for Contour to techniques for Code Workbooks that leverage features of Apache Spark such as broadcast joins. These techniques will be demonstrated on notional
  • The National COVID Cohort Collaborative (N3C) continues to grow as a robust EHR data resource, now with over 3 million persons represented and 4 billion rows of data from more than 42 sites. Currently, 24 multidisciplinary Domain Teams composed of clinical and subject matter experts, statisticians, informaticists, and machine learning specialists are addressing the most pressing clinical questions
  • They say necessity is the mother of invention. In terms of healthcare, one of the most remarkable inventions begat by the pandemic is something called the National COVID Cohort Collaborative (N3C). The vision of the scientists and researchers behind the N3C is to turn massive amounts of already available data into new knowledge urgently needed to study COVID-19 and identify potential treatments
  • N3C held the first Enclave orientation sessions on February 2nd and 9th to engage users of all types with learning to use the N3C Data Enclave. The sessions were conducted by N3C Training Coordinator Shawn O’Neil and had over 100 participants for each session in attendance. This two-part training course will repeat on an ongoing basis, alternating week by week. To view training information and
  • National  COVID Cohort Collaborative Logo
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    Center for Data to Health
    N3C will hold a 2-part virtual orientation to learn how to use the N3C Data Enclave. These sessions are designed for users of all types. The first 2 sessions will take place in February, and then will alternate week by week for ongoing access. Session A - Recommended before attending Session B This session is for those who want to learn about N3C, as well as how to engage with project teams and
  • The National Institutes of Health COVID-19 NeuroDatabank and NeuroBioBank, funded by the National Institute of Neurological Disorders and Stroke, has been initiated at NYU Langone Health. We will create and maintain a national resource documenting and studying neurological complications of coronavirus disease (COVID-19), the illness caused by infection with the SARS-CoV-2 novel coronavirus

  • Navigating the daunting landscape of childhood cancer is getting easier for patients and families thanks to the work of the OCTRI Health Experiences Research Network (HERN) and former OCTRI TL1 scholar Kellee Parker, DO. The OCTRI HERN team conducted 40 interviews with families of childhood cancer survivors to gain insight into the experience childhood cancer. Findings from these interviews
  • CD2H-teal
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    Center for Data to Health

    Join the CD2H InvenioRDM team for their biweekly open-hour discussion! At this upcoming session, you’ll learn about results of early user testing on InvenioRDM’s development. You’ll also hear about the Invenio community, including resources, opportunities for collaboration, and the role of the Community Manager—your helpful navigator in the world of Invenio, and gain insights into work on an

  • Center for Data to Health
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    Center for Data to Health

    The National COVID Cohort Collaborative (N3C) is a partnership among the Clinical and Translational Science Awards (CTSA) Program hubs, distributed clinical data networks (PCORnet, OHDSI, ACT/i2b2, TriNetX), and other partner organizations. The N3C aims to create a national COVID-19 resource of harmonized row-level (e.g. patient-level) EHR data and provision it via a secure enclave for

  • Center for Data to Health
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    Center for Data to Health

    Over the last year+ with support from the National Center for Data to Health (CD2H), and in partnership with CERN, we have collaboratively developed InvenioRDM, an integrated, born-interoperable repository and data catalog to empower researchers to engage in best practices around research data management, sharing, and reuse of digital artifacts and data at their hubs. Good news! We’ve started to

  • CD2H-teal
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    Center for Data to Health

    Office of Science and Technology Policy (OSTP) is seeking public comments on a draft set of desirable characteristics of data repositories used to locate, manage, share, and use data resulting from Federally funded research. Comment period closes 3/6/2020. Make your voice heard!