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Structured Data Capture (SDC) All Hands Meeting. January 31, 2013. Meeting Etiquette. From S&I Framework to Participants: Hi everyone: remember to keep your phone on mute . All Panelists . Remember: If you are not speaking, please keep your phone on mute

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Structured Data Capture (SDC) All Hands Meeting

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    1. Structured Data Capture (SDC)All Hands Meeting January 31, 2013

    2. Meeting Etiquette From S&I Framework to Participants: Hi everyone: remember to keep your phone on mute  All Panelists • Remember: If you are not speaking, please keep your phone on mute • Do not put your phone on hold. If you need to take a call, hang up and dial in again when finished with your other call • Hold = Elevator Music = frustrated speakers and participants • This meeting is being recorded • Another reason to keep your phone on mute when not speaking • Use the “Chat” feature for questions, comments and items you would like the moderator or other participants to know. • Send comments to All Panelists so they can be addressed publically in the chat, or discussed in the meeting (as appropriate).

    3. Agenda

    4. Welcome and Announcements Weekly Meetings Please check the meeting schedule weekly as the meeting link and call in numbers will change. • Structured Data Capture (SDC) Initiative will hold weekly community meetings on Thursdays at 3:25 pm Eastern. • Please see the “All Hands Meeting Information” section of the SDC Wiki Page •

    5. All Hands Meeting Structure Our Community Meetings are scheduled for one hour a week. We believe your time is valuable and appreciate your participation in this initiative. In order to make the most of our short time together, we will start the meeting software for all community meetings at 3:25 pm Eastern. This gives attendees time to log in to the WebEx and Dial-In to the teleconference and address any technical issues they may have prior to the meeting start. We will begin the All Hands Meetings at precisely at 3:30 pm Eastern with administrative items and meeting announcements. Thank you for your participation and we look forward to working with you in the coming months.

    6. SDC WikiOrientation Quick Links Community Announcements Calendar Weekly Meetings Contacts

    7. Join the SDC Initiative You’re Invited! We need experts to develop standards, organizations ready to drive towards implementation, innovators to push the envelope, and patients and providers willing to provide their perspective. Your commitment and participation are critical to our success! To join the Structured Data Capture (SDC) Initiative, go here:, read about the commitment process, and fill out the “Join the Initiative” form at the bottom of the page.

    8. Plan for the Coming Weeks • Over the next few weeks, we will hold All Hands Meetings to finalize the project charter • All Hands Meetings will be held Thursdays from 3:30 to 4:30pm Eastern • SDC wiki page will be updated with meeting information • In Week 4, we will launch workgroups as agreed by the community, beginning with Use Case development • We are planning to host a series of presentations from related projects and initiatives • Similar to ‘concert series’ hosted by other S&I Initiatives • If you have an interest in participating, please contact the support team: Evelyn Gallego ( and Jenny Brush ( )

    9. SDC Project Charter Review Review and Comment • This is your opportunity to provide input! • Updates will made to the wiki after the meeting. • • Please also review and comment on the wiki after the meeting. • Comment form is at the bottom of the Charter & Members Page.

    10. SDC Project Charter Review Switch to Word Doc Notes / comments / edits will be recorded in-line in the word document.

    11. Presentation - FITBIR Presenter: Dr. Matt McAuliffe FITBIR (Federal Interagency Traumatic Brain Injury Research)

    12. Building a Federated TBI Informatics System Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System • Program Co-director • Matthew J. McAuliffe, PhD, Chief, Biomedical Imaging Research Services Section (BIRSS) CIT

    13. Stakeholders • Funded By DMRDP/MRMC

    14. Research • Small sample size • Studies of the same subject at multiple locations • Lack of detailed visibility in all available research data • Unable to easily validate other’s results • Data accessibility • Data takes months/years to get into papers/journals • Data is typically summarized and rarely complete • Data acquired not using CDEs • Data lost after grant ends • Meta-analysis difficult Challenges

    15. Why do we bring all this data together? to replicate experiments to visualize to ask new questions to analyze to simulate to model to search to share to publish to teach

    16. BRICS Components • Study Management and Data Submission • Defining and managing study information and access • Contributing, uploading, and storing the research data • Define federated data stores • Clinical Trial / Research • Defining electronic case report forms • Scheduling and collecting clinical data • Exporting, analyzing and reporting on collected data. • Querying, Reporting and Exporting Data • Include locally collected research data • Include research data from defined, federated sites. • MIPAV Imaging Tool • Image submission tool • Image analysis tools • 3D Image visualization • Global Unique Identifier System • Allows researchers to share data specific to study participants • Correlate participants across studies without exposing personally identifiable information (PII) • Defining and Validating Data • Creating, managing, and searching data elements and form structures • Validating research data against the defined validation rules • User Account Management • Creating, approving, and managing user accounts • Managing access controls, roles & permissions • Single sign on

    17. FITBIR Arch Meta Data ProFoRM (eCRF+) Raw Data RESTFUL API GUID Data Dictionary NINDS CDEs, Unique DE Repository Manager Data Access GUID Webstart Client Validation Webstart Tool Upload Tool Query Tool Download Mgr Generic Forms Tool (eCRF) Query Results Export Package Data Submission Data Access


    19. FITBIR Arch Evolution Single Signon Account Management FITBIR CNRM Parkinson RESTFUL API Data Dictionary NINDS CDEs, Unique DE Account Management Account Management Access to published CDEs and forms OneMind Generic Forms Tool (eCRF)

    20. Common Data Elements • The Interagency CDE Project for TBI was launched in 2008 and involves multiple agencies (NIH/NINDS, NIH/NICHD, NIH/CIT, DOD/MRMC, DOD/DOE, DOD/NICOE, DVBIC, VA, ED/NIDRR, CDC) and hundreds of scientific experts from around the world. • Endorsed by the International Neurosurgical Society and by the International TBI Research (InTBIR) Initiative. • Version 2.0 is posted on the NINDS CDE and FITBIR websiteswith input from NLM. • What’s needed? - Translation into other languages (e.g. Spanish, French and Chinese) - Pre-clinical CDEs (in progress).

    21. Image Analysis Tool

    22. GUID • Researcher logs into GUID client on their university PC and enters in subject PII • GUID server returns a GUID identifier. If the one way hashes match a known subject, an existing GUID will be returned. If this is a new subject, a new GUID will be returned. • GUID client (on university computer) uses personally identifiable information to derive a series of one way hashes which securely encrypt PII information • Researchers are able to access data across studies, without revealing personally identifiable information, while correlating study data across different studies AND uniquely sorting between distinct and redundant datasets • One way hashes are sent off to the GUID server for reference and storage. No personally identifiable information is sent to the system Shared Data Repository • Once data is in the database, a researcher may query this data. The GUID allows researchers to distinguish between unique subjects and recurrent subjects across all datasets. Shared • Once the researcher has a GUID, s/he may submit data associated with this subject. No data may be submitted to the system without a GUID.

    23. GUID Client

    24. Validation Tool

    25. ProFoRMS Study Listing Page (in My Workspace)

    26. ProFoRMS Build Form Page

    27. ProFoRMS Subject Listing Page

    28. Technical Timeline July 2012 FITBIR v1.0 Nov 2012 FITBIR v1.5 Jan 2013 FITBIR v1.6 April 2013 FITBIR v2.0 • Data Dictionary Tool • Data Validation Tool • GUID Tool • Data Contribution • NIH Single Sign-On • NINDS TBI Version 2.0 • Data Download Tool • Centralized DDT • Data Attribution • Outreach/Training for Grantees • Query Tool V1.0 • Meta-Study Analysis • Outreach/Training for Grantees and Other Submitters • ProFoRMS v1.0 (Electronic Form Capture ) • Query Tool (Beta)

    29. Public access site • Website • Access to portal and tools • GUID, • Data Dictionary, • Upload tool, • Query • SOPs Defining, Contributing, and Accessing • Policy

    30. Summary Implementation Policy Ensuring the Integrity, Accessibility, andStewardship of Research Data in the Digital Age Committee on Ensuring the Utility and Integrity of Research Data in a Digital Age; National Academy of Sciences ISBN: 978-0-309-13684-6, 188 pages, (2009) (Executive Summary) User Requirements Governance

    31. Presentation – FITBR Q&A • Question (J. Michael Fitzmaurice (AHRQ)): Would it be feasible for us to adopt what you’ve done and apply it to our use cases? • Though we are more focused on research than clinical, there is a large overlap. • Question (same): In your data dictionary, do you recommend codes at patient-level (e.g., gender, BP, diagnoses)? • Yes, we have data values and permissible values (e.g., gender coded male/female, though we’d like to also support an alias mechanism to record 0s and 1s) • Another step would be introducing LOINC. We link to CDASR’s ID for gender (and they in turn link to CDISC). We will also include a CDISC field/data element. • Question (Mark Pilley): Codification of information – are you looking to use certain coding systems? • We’ve identified data elements for TBI that were defined through SNOMED. Our scope is more research-oriented, but could potentially support more detailed systems. • Question: Landon B: Hybrid EHR system? • We’ve tried to incorporate elements that allow better support of research.

    32. Next Steps • HOMEWORK: Comment on the Project Charter: • • Next Work Group Meeting • Thursday, February 7, 2013 from 3:30pm - 4:30pm Eastern • • Reminder • All SDC Announcements, Meeting Schedules, Agendas, Minutes, Reference Materials, Use Case, Project Charter and general information will be posted on the SDC Wiki page •

    33. Contact Information • For questions, please contact your support leads • Initiative Coordinator: Evelyn Gallego ( • Project Manager: Jenny Brush ( • PM Support: Zachary May ( • Use Case/Requirements Lead: Jennifer Sisto ( • Standards Development Lead: Caryn Just (