Literature DB >> 23340183

Connecting communities to health research: development of the Project CONNECT minority research registry.

Melissa A Green1, Mimi M Kim, Sharrelle Barber, Abedowale A Odulana, Paul A Godley, Daniel L Howard, Giselle M Corbie-Smith.   

Abstract

INTRODUCTION: Prevention and treatment standards are based on evidence obtained in behavioral and clinical research. However, racial and ethnic minorities remain relatively absent from the science that develops these standards. While investigators have successfully recruited participants for individual studies using tailored recruitment methods, these strategies require considerable time and resources. Research registries, typically developed around a disease or condition, serve as a promising model for a targeted recruitment method to increase minority participation in health research. This study assessed the tailored recruitment methods used to populate a health research registry targeting African-American community members.
METHODS: We describe six recruitment methods applied between September 2004 and October 2008 to recruit members into a health research registry. Recruitment included direct (existing studies, public databases, community outreach) and indirect methods (radio, internet, and email) targeting the general population, local universities, and African American communities. We conducted retrospective analysis of the recruitment by method using descriptive statistics, frequencies, and chi-square statistics.
RESULTS: During the recruitment period, 608 individuals enrolled in the research registry. The majority of enrollees were African American, female, and in good health. Direct and indirect methods were identified as successful strategies for subgroups. Findings suggest significant associations between recruitment methods and age, presence of existing health condition, prior research participation, and motivation to join the registry.
CONCLUSIONS: A health research registry can be a successful tool to increase minority awareness of research opportunities. Multi-pronged recruitment approaches are needed to reach diverse subpopulations.
Copyright © 2013. Published by Elsevier Inc.

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Mesh:

Year:  2013        PMID: 23340183      PMCID: PMC3780788          DOI: 10.1016/j.cct.2013.01.001

Source DB:  PubMed          Journal:  Contemp Clin Trials        ISSN: 1551-7144            Impact factor:   2.226


  48 in total

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2.  Targeted intervention strategies to increase and maintain mammography utilization among African American women.

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Journal:  Am J Public Health       Date:  2010-12       Impact factor: 9.308

3.  Attributes of researchers and their strategies to recruit minority populations: results of a national survey.

Authors:  Sandra Crouse Quinn; James Butler; Craig S Fryer; Mary A Garza; Kevin H Kim; Christopher Ryan; Stephen B Thomas
Journal:  Contemp Clin Trials       Date:  2012-07-05       Impact factor: 2.226

4.  Cancer of the colorectum in Maine, 1995-1998: determinants of stage at diagnosis in a rural state.

Authors:  Margaret A Parsons; Kathleen D Askland
Journal:  J Rural Health       Date:  2007       Impact factor: 4.333

Review 5.  Why African Americans may not be participating in clinical trials.

Authors:  Y Harris; P B Gorelick; P Samuels; I Bempong
Journal:  J Natl Med Assoc       Date:  1996-10       Impact factor: 1.798

6.  Recruitment of Older Adults: Success May Be in the Details.

Authors:  Judith C McHenry; Kathleen C Insel; Gilles O Einstein; Amy N Vidrine; Kari M Koerner; Daniel G Morrow
Journal:  Gerontologist       Date:  2012-08-16

7.  Recruitment strategies for minority participation: challenges and cost lessons from the POWER interview.

Authors:  Janet Fulton Keyzer; Joy Melnikow; Miriam Kuppermann; Stephen Birch; Christina Kuenneth; Jim Nuovo; Rahman Azari; Debra Oto-Kent; Mairin Rooney
Journal:  Ethn Dis       Date:  2005       Impact factor: 1.847

8.  Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials.

Authors:  Joel B Braunstein; Noëlle S Sherber; Steven P Schulman; Eric L Ding; Neil R Powe
Journal:  Medicine (Baltimore)       Date:  2008-01       Impact factor: 1.889

9.  Use of state cancer surveillance data to estimate the cancer burden in disaster-affected areas--Hurricane Katrina, 2005.

Authors:  Djenaba A Joseph; Phyllis A Wingo; Jessica B King; Lori A Pollack; Lisa C Richardson; Xiaocheng Wu; Vivien Chen; Harland D Austin; Deirdre Rogers; Janice Cook
Journal:  Prehosp Disaster Med       Date:  2007 Jul-Aug       Impact factor: 2.040

10.  Disparities in treatment and outcome for renal cell cancer among older black and white patients.

Authors:  Sonja I Berndt; H Ballentine Carter; Mark P Schoenberg; Craig J Newschaffer
Journal:  J Clin Oncol       Date:  2007-08-20       Impact factor: 44.544

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1.  Self-reported race and ethnicity of US biobank participants compared to the US Census.

Authors:  Elizabeth Gross Cohn; Nalo Hamilton; Elaine L Larson; Janet K Williams
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2.  Challenges in efficacy research: the case of feeding alternatives in patients with dementia.

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Journal:  J Adv Nurs       Date:  2014-02-25       Impact factor: 3.187

3.  Strategies to Build Trust and Recruit African American and Latino Community Residents for Health Research: A Cohort Study.

Authors:  Ibrahima C Sankaré; Rachelle Bross; Arleen F Brown; Homero E Del Pino; Loretta F Jones; D'Ann M Morris; Courtney Porter; Aziza Lucas-Wright; Roberto Vargas; Nell Forge; Keith C Norris; Katherine L Kahn
Journal:  Clin Transl Sci       Date:  2015-06-21       Impact factor: 4.689

4.  Educating low-SES and LEP survivors about breast cancer research: pilot test of the Health Research Engagement Intervention.

Authors:  Alyssa Nickell; Nancy J Burke; Elly Cohen; Maria Caprio; Galen Joseph
Journal:  J Cancer Educ       Date:  2014-12       Impact factor: 2.037

5.  A web-based registry for patients with sarcoidosis.

Authors:  Alicia K Gerke; Fan Tang; Yvette C Cozier; Michael T Lash; James Schappet; Emily Phillips; Philip M Polgreen
Journal:  Sarcoidosis Vasc Diffuse Lung Dis       Date:  2017-04-28       Impact factor: 0.670

6.  Promoting Retention: African American Older Adults in a Research Volunteer Registry.

Authors:  LaToya N Hall; Lisa J Ficker; Letha A Chadiha; Carmen R Green; James S Jackson; Peter A Lichtenberg
Journal:  Gerontol Geriatr Med       Date:  2016-11-16

7.  Facilitating access to health research through a participatory research register: a feasibility study in outpatient clinics.

Authors:  Richard M Martin; Jenny L Donovan; Verity A Leach; John D McGeagh; Ruta Margelyte; Niamh M Redmond; Axel Walther; Sabi Redwood
Journal:  Pilot Feasibility Stud       Date:  2017-06-21

8.  Effectiveness and Cost of Recruiting Participants to a Research Registry Using an Emergency Department Research Associate Program.

Authors:  Carrie Dykes; Joseph Glick; Beau Abar; Ann Dozier
Journal:  Clin Transl Sci       Date:  2019-10-23       Impact factor: 4.689

Review 9.  Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups.

Authors:  Billie Bonevski; Madeleine Randell; Chris Paul; Kathy Chapman; Laura Twyman; Jamie Bryant; Irena Brozek; Clare Hughes
Journal:  BMC Med Res Methodol       Date:  2014-03-25       Impact factor: 4.615

10.  Barriers to Obtaining Sera and Tissue Specimens of African-American Women for the Advancement of Cancer Research.

Authors:  Katherine J Strissel; Dequina A Nicholas; Myriam Castagne-Charlotin; Naomi Ko; Gerald V Denis
Journal:  Clin Med Insights Womens Health       Date:  2016-07-14
  10 in total

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