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SHARE: Simplifying Human Subject Data Sharing for Alcohol Researchers

Award Number: R43AA027981
ORGANIZATION: NATIONAL INSTITUTE ON ALCOHOL ABUSE AND ALCOHOLISM
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 09/01/2019
PERIOD OF PERFORMANCE END DATE: 08/31/2020

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SHARE: Simplifying Human Subject Data Sharing for Alcohol Researchers - Abstract The National Institute of Mental Health (NIMH) Data Archive (NDA) collects and shares de-identified human subjects data from hundreds of NIH-funded research projects across many mental health-related scientific domains with qualified researchers. A new NDA repository is created for the National Institute on Alcohol Abuse and Alcoholism Data Archive (NIAAADA) and will serve as the portal for NIAAA-related data submissions and access. The NIAAA data-sharing policy (NOT-AA-18-010) released in June of 2018, requires that— beginning in 2019—all NIAAA grant applications involving human subjects must include plans for the submission of study data to NIAAADA. The first wave of data submission to NIAAADA is expected in 2020. Many obstacles exist for alcohol researchers to comply with this policy, especially for those with limited budget and information technology and data management support. To submit the study data, researchers have to map their data to the right fields in the right format in a given data template, which often requires researchers to manipulate their data by-hand or with complicated scripts, or request a new data structure from NDA, which compromises the goal of data sharing. These data submission processes are error prone, time-consuming, and require certain technical skills. Our ultimate goal is to provide a nearly-automated process for the submission of alcohol research data into the NIAAADA so that the data submission can be performed accurately and efficiently by alcohol researchers with minimum IT knowledge and resources. We propose to develop and validate the Share HumAn REsearch (SHARE) platform to address the unmet need for assisting alcohol researchers with the submission of study data to NIAAADA. SHARE does so by offering the SHARE Measure Library of pre-defined measures that are already mapped to NDA data dictionaries. Alcohol researchers need to only select the measures that they want to use for their studies and let SHARE do the rest for data submission to NIAAADA. Phase I aims include: 1) Collect stakeholder feedback from ten alcohol researchers via focus groups and interviews to understand how they currently collect and manage their human subject questionnaire data and explore how they would submit the data to the NIAAADA with an “ideal” tool; 2) Develop the prototype using a user-centric design process and the latest e-technologies. Also code ten common alcohol measures in the SHARE measure library using the NDA data dictionary standards and integrate the SHARE assessment engine with REDCap, a popular data collection program; 3) Evaluate the prototype by conducting two rounds of usability tests with twenty alcohol researchers to evaluate system usability and perceived usefulness of the SHARE solution. Also use the NDA Validator to validate data exported from SHARE.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2021 ( Subtotal = $0 )
2021	2019	BRIGHTOUTCOME INC.	1110 LAKE COOK RD STE 167	BUFFALO GROVE	IL	60089	LAKE	USA	Alcohol Research Programs	000	1	1/30/2021	NEW	$0
														Subtotal = $0

Issue Date FY: 2019 ( Subtotal = $224,924 )
2019	2019	BRIGHTOUTCOME INC.	1110 LAKE COOK RD STE 167	BUFFALO GROVE	IL	60089	LAKE	USA	Alcohol Research Programs	000	1	8/26/2019	NEW	$224,924
														Subtotal = $224,924

Grand Total All Awards = $224,924

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SHARE: Simplifying Human Subject Data Sharing for Alcohol Researchers

Award Number: R43AA027981

ORGANIZATION: NATIONAL INSTITUTE ON ALCOHOL ABUSE AND ALCOHOLISM

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 09/01/2019

PERIOD OF PERFORMANCE END DATE: 08/31/2020

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