Notice of Modification of the Data Sharing Policy for the Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System


Notice Number: NOT-NS-13-018


Key Dates

Release Date:  March 21, 2013

Related Announcements

NOT-NS-12-016
NOT-NS-12-017   

Issued by

National Institute of Neurological Disorders and Stroke (NINDS)

Purpose

The Data Sharing Policy for the Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System  is modified.  The overall document has been shortened and reorganized to make it clearer and more concise.  Also, the Data Submission and Data Sharing Schedules have been modified for greater clarity and feasibility as follows:  

Data Submission Schedule

Data include all research and clinical assessments and information obtained via interviews, direct observations, laboratory tasks and procedures, records reviews, genetic and genomic data, neuroimaging data, neuropsychological assessments, data from physical examinations, etc. In addition, supporting documentation that is needed to enable an investigator unfamiliar with the dataset to understand and use the data is also required.  For example, supporting documentation may include non-copyrighted data collection forms, study procedures and protocols, data dictionary rationale, exclusion criteria, website references, a listing of major study publications, and the definition of a genomic analysis protocol.  The following are not included as data:  laboratory notebooks, preliminary analyses, drafts of scientific papers, plans for future research, peer review reports, communications with colleagues, or physical objects, such as gels or laboratory specimens. All data will be submitted to FITBIR on a quarterly basis according to the following schedule:

Data collection period

Quarterly upload due:

January 1 – March 31

June 30

April 1 – June 30

September 30

July 1 – September 30

December 31

October 1 – December 31

March 31


Data Sharing Schedule

Six months after the end of the performance period of the grant, data will be made available to other researchers who have submitted data to FITBIR (Submitters). Twelve months after the end of the grant or contract, data will be open to all qualified and approved researchers (Recipients).

Performance Period of Research Study Ends

Data Available to FITBIR “Submitters”

Data Available to All Approved FITBIR Data “Recipients”

Time 0  

6 months

12 months


Investigators are also strongly encouraged to collaborate and share data throughout the study to accelerate research and advance knowledge on TBI.

Inquiries

Please direct all inquiries to:

FITBIR Operations Team
Email: FITBIR-ops@mail.nih.gov
Website: https://fitbir.nih.gov/ 


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