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PROMIS-Deaf Profile: Inclusion of Deaf Patients in Disability and Outcomes Research

Award Number: R01DC014463
ORGANIZATION: NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

Group Awards By Issue Date FY or Funding FY:

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DESCRIPTION (provided by applicant): Current patient-reported outcome measures are heavily dependent on English, which present serious language barriers to deaf and hard of hearing (DHH) patients who use American Sign Language (ASL). The availability of patient-reported outcome measures in ASL and English and such that is valid for users of accessible technology and services will provide important insights on improving prevention and treatment models that will lead to better personal and public health within the underserved DHH population. The research plan builds on Dr. Kushalnagar's prior research on communication and quality of life outcomes with deaf and hard of hearing (DHH) population. Communication-related fatigue is relevant to healthcare outcomes. Specific aims include (1) describing the linguistic and internal validity of PROMIS-Deaf profile, (2) examining QoL domains across DHH sub-groups, and (3) evaluating the prevalence of communicative stress and risk factors for health status and generic QoL in a nationwide sample of early-deafened adults. The study will be conducted by a research team that includes: an early career investigator with expertise in quality of life outcomes in DHH population, a senior investigator with expertise in patient reported outcome measures (the creator of the FACIT fatigue QoL measure), a psychometrician with experience in conducting IRT and psychometric analyses for patient reported outcome measures, an audiologist with expertise in (re)habilitative audiology and hearing related outcomes, an ASL translation expert, and a biostatistician. The Advisory Committee consists of experts on the subject matter related to the project and who are nationally known for their work with DHH population. Results from this study will provide a better understanding of the mechanisms that may contribute to poor quality of life frequently observed for individuals with hearing loss. The goals of this application are consistent with the NIDCD 2012-2016 strategies related to improving outcomes for human communication and reducing health disparities, and expected findings will support the development of a future grant proposal for a randomized study that will assess the ability of PROMIS- Deaf profile to detect minimally important changes with intervention.


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: 2024 ( Subtotal = -$163,228 )
2024	2020	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	000	5	3/19/2024	SUPPLEMENT FOR EXPANSION	-$163,228
														Subtotal = -$163,228

Issue Date FY: 2022 ( Subtotal = $0 )
2022	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVENUE, NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	000	5	8/30/2022	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2021 ( Subtotal = -$99,669 )
2021	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVENUE, NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	001	5	8/6/2021	NON-COMPETING CONTINUATION	$0
2021	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	000	5	11/6/2020	SUPPLEMENT FOR EXPANSION	-$99,669
														Subtotal = -$99,669

Issue Date FY: 2020 ( Subtotal = $179,842 )
2020	2020	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	003	5	5/5/2020	SUPPLEMENT FOR EXPANSION	$179,842
2020	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	002	5	4/14/2020	NON-COMPETING CONTINUATION	$0
2020	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	001	5	12/11/2019	SUPPLEMENT FOR EXPANSION	$0
2020	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	000	5	12/11/2019	SUPPLEMENT FOR EXPANSION	$0
														Subtotal = $179,842

Issue Date FY: 2019 ( Subtotal = $717,566 )
2019	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	006	5	8/28/2019	SUPPLEMENT FOR EXPANSION	$99,669
2019	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	003	5	8/13/2019	SUPPLEMENT FOR EXPANSION	$236,541
2019	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	004	5	8/14/2019	SUPPLEMENT FOR EXPANSION	$199,350
2019	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	002	5	8/7/2019	NON-COMPETING CONTINUATION	$230,400
2019	2019	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	005	5	8/20/2019	NON-COMPETING CONTINUATION	-$48,394
2019	2016	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	000	2	1/9/2019	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$32,525
2019	2015	ROCHESTER INSTITUTE OF TECHNOLOGY (INC)	1 LOMB MEMORIAL DR	ROCHESTER	NY	14623	MONROE	USA	Research Related to Deafness and Communication Disorders	001	1	1/9/2019	SUPPLEMENT FOR EXPANSION	-$32,525
														Subtotal = $717,566

Issue Date FY: 2018 ( Subtotal = $545,734 )
2018	2018	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	002	4	8/16/2018	SUPPLEMENT FOR EXPANSION	$187,476
2018	2018	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	000	4	8/1/2018	NON-COMPETING CONTINUATION	$307,014
2018	2018	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	001	4	8/3/2018	SUPPLEMENT FOR EXPANSION	$51,244
														Subtotal = $545,734

Issue Date FY: 2017 ( Subtotal = $406,760 )
2017	2017	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	001	3	8/31/2017	SUPPLEMENT FOR EXPANSION	$97,802
2017	2017	GALLAUDET UNIVERSITY	800 FLORIDA AVE NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	000	3	8/23/2017	NON-COMPETING CONTINUATION	$308,958
														Subtotal = $406,760

Issue Date FY: 2016 ( Subtotal = $371,840 )
2016	2016	GALLAUDET UNIVERSITY	800 FLORIDA AVENUE, NE	WASHINGTON	DC	20002	DISTRICT OF COLUMBIA	USA	Research Related to Deafness and Communication Disorders	000	2	7/22/2016	CHANGE OF GRANTEE / TRAINING INSTITUTION / AWARDING INSTITUTION	$371,840
														Subtotal = $371,840

Issue Date FY: 2015 ( Subtotal = $395,543 )
2015	2015	ROCHESTER INSTITUTE OF TECHNOLOGY	ONE LOMB MEMORIAL DRIVE	ROCHESTER	NY	14623	MONROE	USA	Research Related to Deafness and Communication Disorders	001	1	9/10/2015	SUPPLEMENT FOR EXPANSION	$68,621
2015	2015	ROCHESTER INSTITUTE OF TECHNOLOGY	ONE LOMB MEMORIAL DRIVE	ROCHESTER	NY	14623	MONROE	USA	Research Related to Deafness and Communication Disorders	000	1	7/27/2015	NEW	$326,922
														Subtotal = $395,543

Grand Total All Awards = $2,354,388

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PROMIS-Deaf Profile: Inclusion of Deaf Patients in Disability and Outcomes Research

Award Number: R01DC014463

ORGANIZATION: NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

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

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