3rd FITBIR Stakeholders Meeting

3rd FITBIR Stakeholders Meeting

July 19, 2021
July 19, 2021

Location: 

NIH Videocast
Registration

Event Description: 

00pm ET. Virtual Meeting Hosted by DHA/MRDC and NIH.

Speakers Bios (pdf, 1.6 mb)
Meeting Agenda (pdf, 282 kb)

The National Institute of Neurological Disorders and Stroke (NINDS) and the U.S. Army Medical Research and Development Command (USAMRDC) will be hosting the 3rd FITBIR Stakeholders Meeting. FITBIR is a secure, interagency data repository that supports data sharing across the entire TBI research field. This virtual meeting will provide an update on FITBIR capabilities and data holdings, gather input on how to enhance FITBIR to meet the needs and expectations of the TBI research community, and consider data-sharing strategies to foster equitable advances in TBI treatment and outcomes. The keynote speaker for the event is Dr. Susan Gregurick, the Associate Director for the Data Science and Director of the Office of Data Science Strategy (ODSS) at the NIH . Dr. Gregurick’ s presentation will provide the NIH ODSS perspective on the significance of FAIR data principles and practices in biomedical research.

The meeting will also consist of several panel sessions:

  • The Patient Perspective Panel, Dr. Radha Holavanahalli (9:50 AM -10:30 AM ET) focuses on the experiences of those with a history of TBI and their caregivers. It will also provide the patient and caregiver perspective on participating in research studies, data sharing and the prioritization of unanswered research questions.
  • The Data Submission Experiences Panel, Dr. Dwayne Taliaferro (1:00 – 1:45 PM ET) will highlight three large-scale studies submitted to FITBIR, including a summary of available data and meta-data for each study.
  • The Data Access Experiences Panel, Dr. Dwayne Taliaferro (1:45 PM – 2:30 PM ET) will discuss novel findings and publications based on the re-use of FITBIR data and will inform attendees about the process of data selection and access.
  • The FITBIR Experiences – Usability Panel, Dr. Matthew McAuliffe (2:45 PM – 3:45 PM ET) will be a moderated discussion of the processes of submitting and accessing FITBIR data, including challenges, methods development, and pipelines to improve efficiencies.
  • The Best Data Management Practices Panel, Dr. Christie Vu  (3:45 PM – 4:45 PM ET) will be a moderated discussion of best practices in data management within laboratories and institutions for alignment with FITBIR policies and structures, such as data curation and quality control, cross-mapping, and the use of common data elements.
  • The FITBIR Policy and Holdings Panels Addressing Health Disparities Panel, Dr. Richard Benson (4:45 PM – 5:45 PM ET) will be a moderated discussion of known TBI-related health disparities and whether FITBIR Policies and holdings can enable better understanding and approaches to reduce these disparities.

The goal of this meeting is to engage the TBI community. Participants will be provided an update on FITBIR systems capabilities and data holdings. This virtual meeting will include question and answer interactions and serve as an opportunity to provide feedback about using FITBIR.

Agenda

Time Event
9:00 – 9:20 AM Welcome and Opening Remarks
Walter Koroshetz, MD | Director, NINDS
Commander Travis M. Polk, MD, FACS | Director, Combat Casualty Care Research Program, U.S. Army Medical Research and Development Command (USAMRDC)
9:20 – 9:50 AM NIH ODSS Perspective on FAIR data principles
Susan Gregurick, PhD | Associate Director for Data Science, NIH
9:50 – 10:45 AM Patient Perspective
The session focuses on the experiences of those with a history of TBI and their caregivers. It will also provide the patient and caregiver perspective on participating in research studies, data sharing, and the prioritization of unanswered research questions.

Moderator:
Radha Holavanahalli, PhD | Rehabilitation Program Specialist, National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR)

Panelists:
Richard Anderson | Brain Injury Alliance of New Jersey, TBI Survivor
Rose Anderson, Caregiver
Captain Johnny Cebak, DO, PhD | Mayo Clinic, TBI Survivor
Julie Self, Caregiver
Allan L. Service, PhD | TBI Model Systems National Data and Statistical Center, TBI Survivor
10:45 – 11:00 AM BREAK
 
 

Session I: Current State of FITBIR
Moderator: Rebecca Berman, PhD | Health Program Specialist, NINDS

11:00 – 11:15 AM Overview of FITBIR Policies & Holdings
Data submission, access policies, and FITBIR holdings
Nsini Umoh, PhD | Program Director, TBI, NINDS
11:15 – 11:45 AM FITBIR Processes & Operations
Initiation of a study, Common Data Elements/Form usage, support during submissions, data quality control, and the closeout process.
Alison Garcia, BSE | Project Manager, Center for Information Technology (CIT), NIH
11:45 AM – 12:15 PM FITBIR Technological Capabilities & Development 
IT security and PII protections, interoperability (APIs, BioSend), development of neuropathology library, and future developments
Matt McAuliffe, PhD | Co-Director FITBIR, CIT, NIH
12:15 – 12:30 PM Session 1 Panel Discussion and Q & A
12:30 – 1:00 PM BREAK
  Session II: Stakeholders Session
Moderator: Dwayne Taliaferro, PhD | Health Science Program Manager, Congressionally Directed Medical Research Programs (CDMRP)
1:00 – 1:45 PM Data Submission Experiences
The session will highlight three large-scale studies submitted to FITBIR, including a summary of available data and meta-data for each study.
ADAPT: Laurie Silfies | Systems/Programmer, University of Pittsburgh
CARE: Melissa Baker | Patient Coordinator, Datalys Center
CENC: Sreekanth Kamineni | Database Analyst, University of Utah
1:45 – 2:30 PM Data Access Experiences
This session will discuss novel findings and publications based on the re-use of FITBIR data and will inform attendees about the process of data selection and access.
Tayo Obafemi-Ajayi, PhD | Associate Professor, Computational Learning Systems Lab, Missouri State University.
Center, University of Pittsburgh
David Okonkwo, MD, PhD | Director of the Neurotrauma Clinical Trials Center, University of Pittsburgh
Nicola de Souza | PhD Candidate, School of Graduate Studies, Rutgers Biomedical and Health Sciences
2:30 – 2:45 PM BREAK
2:45 – 3:45 PM

Session III: Moderated Panel Discussions
FITBIR Experience - Usability
This session will be a moderated discussion of the processes of submitting and accessing FITBIR data, including challenges, methods development, and pipelines to improve efficiencies.

Moderator:
Matt McAuliffe, PhD | Co-Director FITBIR, CIT, NIH

Panelists:
Kristen Dams-O'Connor, PhD | Professor of Rehabilitation Medicine and Neurology, Icahn School of Medicine at Mount Sinai
Amy Jak, PhD | Professor of Psychiatry, University of California, San Diego 
Christine MacDonald, PhD | Professor of Neurological Surgery, University of Washington
Dave Mellick, PhD | Director of Research Operations, Craig Hospital

3:45 – 4:45 PM Best Data Management Practices
The goal of this session is to discuss best practices in data management within laboratories and institutions for alignment with FITBIR policies and structures, such as data curation and quality control, cross-mapping, and the use of common data elements.

Moderator:
Christie Vu, PhD | Health Science Program Manager, Congressionally Directed Medical Research Programs (CDMRP)

Panelists:
Vibeke Brinck, MS | Director of System Engineering, QuesGen Systems, Inc.
Adam Ferguson, PhD | Director of Data Science, Brain and Spinal Injury Center (BASIC) and Professor, Department of Neurological Surgeries, University of California, San Francisco
Michelle Harris | FITBIR Operations
Dominic Nathan, PhD | CNRM Informatics Director, Center for Neuroscience and Regenerative Medicine 
Elizabeth Wilde, PhD | Associate Professor, University of Utah
4:45 – 5:45 PM FITBIR Policy, Holdings, and Health Disparities
This session will provide background information about known TBI-related health disparities and will address whether FITBIR policies and holdings can enable better understanding and approaches to reduce these disparities.

Moderator:
Richard Benson, MD, PhD | Director of the Office of Global Health and Health Disparities, NINDS

Panelists:
Patrick Bellgowan, PhD | Deputy Associate Director, NINDS
Matthew Breiding, PhD | Team Lead, Division of Injury Prevention, CDC
Stacey Chambers, MS | Scientific Project Manager, NINDS
Nathalia Jimenez, MD, MPH | Pediatric Anesthesiologist, Seattle Children's Hospital
Erica Littlejohn, PhD | Science & Technology Policy Fellow, Office of Global Health and Health Disparities, NINDS
Xinzhi Zhang, MD, PhD | Chief, Health Inequities and Global Health Branch Center for Translation Research & Implementation Science National Heart, Lung, and Blood
Institute | National Institutes of Health
5:45 – 6:00 PM Closing Remarks 
Patrick Bellgowan, PhD | Deputy Associate Director, NINDS