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NIH webinar Global Perspectives on Standards and Common Data Elements Used in Patients Data and Biospecimens Collection

January 25, 2018 @ 10:00 - 13:00


Sponsored by the NIH Data Science Special Interest Group

The NIH Data Science Special Interest Group is proud to welcome the new year of 2018 and host a session* (broadcast via webinar, see information below) about major initiatives around the world on the need for, challenges around, and implementation of standards in clinical data collections for research. The session will start with demonstrating the need for standards, follow up with some use cases and an overview of the NIH CDEs repository, and end with a question-and-answer discussion with attendees. We hope that the session will continue to increase the awareness of the importance of using standards for biomedical research and enhance collaboration and data sharing. Registrants will be able to send questions before and during the session.

Speakers include:


Full name Talk title Title & Affiliation
Todd Carpenter Identify Everything: The role of standards and identification systems in communicating science Executive Director NISO, the National Information Standards Organization
David van Enckevort Common Data Elements in Biobanking – Experiences from BBMRI, CTMM-TraIT and RD-Connect Project Manager Department of Genetics, University Medical Center Groningen, University of Groningen, The Netherlands
Marco Roos Do not share, be FAIR! – how FAIR data principles add flexibility to using data elements across multiple locations Assistant professor & project managerHuman Genetics Department, Leiden University Medical Centre (LUMC), Leiden, the Netherlands
Nicola Mulder Data standards and harmonization in H3Africa Head of the H3ABioNet Bioinformatics Network and the Computational Biology Division at UCTUniversity of Cape Town, South Africa
Yehudit Cohen The Israeli national biobank as a research enabler: A database connecting biospecimens with clinical data, for biomedical research Scientific DirectorMIDGAM, Israel National Biobank, Ministry of Health, Israel


Standardizing for Science: Creating an Infrastructure for Large-Scale Learning


Director, PEDSnet Data Coordinating Center, PEDSnetCHOP/Penn Department: PediatricsChildren’s Hospital of Philadelphia
Shobha Sharma NCBI BioCollections Database: an overview Staff ScientistNational Center for Bioinformatics (NCBI), Library of Medicine, National Institutes of Health


Liz Amos NIH CDEs repository: an overview Librarian & CDE repository lead- National Information Center on Health Services Research and Health Care Technology (NICHSR)

National Library of Medicine, National Institutes of Health


*Webinar registration and session location:

Please register for Global Perspectives on Standards and Common Data Elements Used in Patients Data and Biospecimens Collection at: https://attendee.gotowebinar.com/register/787330976882155265

After registering, you will receive a confirmation email containing information about joining the webinar. Please keep in mind that although the session is planned from 10:00AM-1:00PM EDT, we requested additional time, before and after, to ensure a smooth start and ending.

NIH staff and non-NIH guests can attend the session in person in Conference Room D, in the Natcher Building.

To submit questions during the session please submit them directly in the GoToWebinar interface.


The Data Science SIG steering committee


Individuals with disabilities who need Sign Language Interpreters and/or reasonable accommodation to participate in this event should contact, Ben Busby and/or the Federal Relay (1-800-877-8339). For questions regarding the session content /presentations please contact Yaffa Rubinstein

Sponsored by: Mike Huerta, Associate Director, NLM


January 25, 2018
10:00 - 13:00


NIH Data Science Special Interest Group
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