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Tytuł pozycji:

Utilizing Community Engagement Studios to inform patient experience in a multicenter randomized control trial.

Tytuł :
Utilizing Community Engagement Studios to inform patient experience in a multicenter randomized control trial.
Autorzy :
Nielson C; Division of Otolaryngology - Head and Neck Surgery, University of Utah School of Medicine, Salt Lake City, UT, USA.
Huang Y; Division of Otolaryngology - Head and Neck Surgery, University of Utah School of Medicine, Salt Lake City, UT, USA.
Kull CA; Division of Otolaryngology - Head and Neck Surgery, University of Utah School of Medicine, Salt Lake City, UT, USA.
Park AH; Division of Otolaryngology - Head and Neck Surgery, University of Utah School of Medicine, Salt Lake City, UT, USA. Electronic address: .
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Źródło :
International journal of pediatric otorhinolaryngology [Int J Pediatr Otorhinolaryngol] 2020 Jun; Vol. 133, pp. 110007. Date of Electronic Publication: 2020 Mar 14.
Typ publikacji :
Journal Article
Język :
English
Imprint Name(s) :
Publication: Limerick : Elsevier Scientific Publishers
Original Publication: [Amsterdam] Elsevier/North-Holland.
MeSH Terms :
Patient Participation*
Patient Selection*
Antiviral Agents/therapeutic use ; Cytomegalovirus Infections/complications ; Cytomegalovirus Infections/congenital ; Cytomegalovirus Infections/drug therapy ; Feedback ; Female ; Hearing Loss, Sensorineural/drug therapy ; Hearing Loss, Sensorineural/virology ; Humans ; Male ; Multicenter Studies as Topic ; Parents ; Patient Education as Topic ; Randomized Controlled Trials as Topic ; Research Design ; Stakeholder Participation ; Valganciclovir/therapeutic use
References :
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Grant Information :
T35 DK103596 United States DK NIDDK NIH HHS; U01 DC014706 United States DC NIDCD NIH HHS
Contributed Indexing :
Keywords: Clinical trials; Community engagement; Otolaryngology research
Substance Nomenclature :
0 (Antiviral Agents)
GCU97FKN3R (Valganciclovir)
Entry Date(s) :
Date Created: 20200326 Date Completed: 20201020 Latest Revision: 20210602
Update Code :
20210623
PubMed Central ID :
PMC7225038
DOI :
10.1016/j.ijporl.2020.110007
PMID :
32208178
Czasopismo naukowe
Objective: To determine whether a community engagement approach can provide feedback for implementation of valuable measures to improve the outcome of a clinical trial.
Methods: Review of the results from a Community Engagement Studio (CE Studio) for the ValEAR trial: an NIH-funded, multi-institutional study designed to research the efficacy of valganciclovir in the treatment of congenital cytomegalovirus (cCMV)-induced hearing loss. Participants were given information about the trial then asked a series of questions to assess their input on the merits or weaknesses affecting their participation in the trial.
Results: Thirteen parents whose children have congenital CMV infection were recruited for the CE Studio. The overall theme from the responses was a desire to advance the field but a need to clearly understand the risks and benefits of participation. Many requested more educational resources, more printed materials, or greater access to researchers if questions arose. Many welcomed having patient stories and information displayed in a dedicated website or through social media.
Conclusion: This community engagement approach provided useful feedback from families similar to those expected to be potential enrollees in the CMV ValEAR trial. In response to parental comments, two educational videos were created: one on the general topic of cCMV and the other specific to the CMV ValEAR trial. Researchers who wish to optimize their clinical trial's success should consider incorporating a CE Studio into their study design.
(Published by Elsevier B.V.)

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