Literature DB >> 29714606

Developing and Launching a Research Participant Registry.

Jean C McSweeney1,2,3, Beatrice Boateng2,4,3,5, Laura James2,4,3,5, Pearl Anna McElfish6,4,3,5, David Robinson3,5, Sandra E Hatley3,5, Pamela Christie3,5, Nia Indelicato3,5.   

Abstract

BACKGROUND: A major challenge in clinical research today is the difficulty that studies have in meeting recruitment goals. Up to 48% of studies do not meet accrual goals within the specified timeframe, significantly delaying the progress of projects and the dissemination of findings. This pervasive problem is a recruitment crisis. We developed a representative, ethnically and racially diverse research participant registry in a predominantly rural state with high levels of health care disparities and minority populations. We sought input at each step of development from members of community advisory boards (CABs) across Arkansas. We report how community involvement in the development of the registry was implemented.
METHODS: Members of CABs were partners in developing all aspects of the registry website, including the name, content, appearance, educational messages, and testimonials used. Constructs from the Health Belief Model informed the educational messages and supported the intense multimedia campaign used to launch and promote ongoing registrations. Using CAB guidance, community events were held throughout the state of Arkansas at venues with diverse racial and ethnic attendance.
RESULTS: From April 1, 2016 to September 1, 2017, 4,002 people registered statewide who match the demographic profile of Arkansas.
CONCLUSION: CAB involvement in the registry, multiple cues to action, and face-to-face contact with diverse lay audiences throughout the state were key components of the successful registry launch.

Entities:  

Mesh:

Year:  2018        PMID: 29714606      PMCID: PMC8815107          DOI: 10.1080/10410236.2018.1465794

Source DB:  PubMed          Journal:  Health Commun        ISSN: 1041-0236


  3 in total

1.  A Content Analysis of Organ Donation Stories Printed in U.S. Newspapers: Application of Newsworthiness.

Authors:  Thomas Hugh Feeley; Aisha K O'Mally; Jessica M Covert
Journal:  Health Commun       Date:  2015-09-30

2.  Clinical research subject recruitment: the Volunteer for Vanderbilt Research Program www.volunteer.mc.vanderbilt.edu.

Authors:  Paul A Harris; Lynda Lane; Italo Biaggioni
Journal:  J Am Med Inform Assoc       Date:  2005-07-27       Impact factor: 4.497

3.  The Influence of Race and Ethnicity on Becoming a Human Subject: Factors Associated with Participation in Research.

Authors:  Mary A Garza; Sandra Crouse Quinn; Yan Li; Luciana Assini-Meytin; Erica T Casper; Craig S Fryer; James Butler; Natasha A Brown; Kevin H Kim; Stephen B Thomas
Journal:  Contemp Clin Trials Commun       Date:  2017-05-24
  3 in total
  5 in total

1.  Revising Recruitment for Focus Groups to Meet Shifting Needs During COVID-19.

Authors:  Pearman D Parker; Jean C McSweeney; Kristie B Hadden; Kaycee G Hess
Journal:  Nurs Res       Date:  2022 Mar-Apr 01       Impact factor: 2.381

2.  Recruitment Issues in Emerging Adult Populations: Focus on Adult Congenital Heart Disease.

Authors:  Laura Hays; Jean McSweeney; Anita Mitchell; Christina Bricker; Angela Green; Reid D Landes
Journal:  Nurs Rep       Date:  2020-12-02

3.  Cross-sectional survey of parental barriers to participation in pediatric participant research registries.

Authors:  Rebecca A Slotkowski; Shirley F Delair; Kari A Neemann
Journal:  PLoS One       Date:  2022-05-18       Impact factor: 3.240

4.  Arkansans' Preferred COVID-19 Testing Locations.

Authors:  Pearl A McElfish; Don E Willis; Keneshia Bryant-Moore; Martha O Rojo; Jennifer A Andersen; Kyle F Kaminicki; Laura P James
Journal:  J Prim Care Community Health       Date:  2021 Jan-Dec

5.  COVID-19 vaccine hesitancy: Race/ethnicity, trust, and fear.

Authors:  Don E Willis; Jennifer A Andersen; Keneshia Bryant-Moore; James P Selig; Christopher R Long; Holly C Felix; Geoffrey M Curran; Pearl A McElfish
Journal:  Clin Transl Sci       Date:  2021-07-02       Impact factor: 4.438

  5 in total

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