Literature DB >> 21584223

Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar.

Ida J Spruill1.   

Abstract

Despite some recruitment success in biomedical research among minorities, participation by African-American families into research, specifically genetic research, is lower than Caucasian families (Bowen and Penchaszadeh Community Genet 11:189-190, 2008). Such low participation rates by African-Americans prevent the exploration of specific ethnic differences in patterns of diseases and diminish the identification of specific disease risks among ethnic groups (Bowen and Penchaszadeh Community Genet 11:189-190, 2008). Although African-Americans are heterogeneous, few studies exist to describe effective recruitment strategies across diverse African-American populations, and even fewer studies share effective strategies for the enrollment of African-American families into genetic research. A process evaluation of recruitment strategies used by Project SuGar (a community-based genetic research study focusing on families affected by type 2 diabetes) to enroll African-American families into genetic research was conducted. Our goal was to enroll 400 affected African-American families, and our results yielded 672 families, (n=672). Our success can be attributed to the formation of a Citizen Advisory Committee, recruitment style, flexible protocol, and formal agreement with community health centers. We found that African-American families will participate in research and that providing tangible benefits to the community and utilizing a sense of patience can enhance positive recruitment results. Data from this study may be used to recruit geographically isolated families into genetic research.

Entities:  

Keywords:  African-Americans; Families; Genetics; Gullah; Recruitment; Rural

Year:  2010        PMID: 21584223      PMCID: PMC3093663          DOI: 10.1007/s12687-010-0017-x

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  15 in total

1.  Factors affecting research participation in African American college students.

Authors:  Vanessa A Diaz; Arch G Mainous; Ashleigh A McCall; Mark E Geesey
Journal:  Fam Med       Date:  2008-01       Impact factor: 1.756

2.  Special issue: enhancing minority recruitment into genetics research.

Authors:  Deborah J Bowen; Victor B Penchaszadeh
Journal:  Community Genet       Date:  2008-04-14

3.  African Americans' participation in clinical research: importance, barriers, and solutions.

Authors:  Richard D Branson; Kenneth Davis; Karyn L Butler
Journal:  Am J Surg       Date:  2007-01       Impact factor: 2.565

4.  Recruitment experience in the first phase of the African American Hereditary Prostate Cancer (AAHPC) study.

Authors:  C Royal; A Baffoe-Bonnie; R Kittles; I Powell; J Bennett; G Hoke; C Pettaway; S Weinrich; S Vijayakumar; C Ahaghotu; T Mason; E Johnson; M Obeikwe; C Simpson; R Mejia; W Boykin; P Roberson; J Frost; L Faison-Smith; C Meegan; N Foster; P Furbert-Harris; J Carpten; J Bailey-Wilson; J Trent; K Berg; G Dunston; F Collins
Journal:  Ann Epidemiol       Date:  2000-11       Impact factor: 3.797

5.  Recruitment of families for genetic studies of epilepsy.

Authors:  Ruth Ottman; Karina Berenson; Christie Barker-Cummings
Journal:  Epilepsia       Date:  2005-02       Impact factor: 5.864

Review 6.  Recruiting minorities into clinical trials: toward a participant-friendly system.

Authors:  G M Swanson; A J Ward
Journal:  J Natl Cancer Inst       Date:  1995-12-06       Impact factor: 13.506

7.  Studying genetic research participants: lessons from the "Learning About Research in North Carolina" study.

Authors:  Giselle Corbie-Smith; Connie Blumenthal; Gail Henderson; Joanne Garrett; Jada Bussey-Jones; Mairead Moloney; Robert S Sandler; Stacey W Lloyd; Jessica Dorrance; Jane Darter
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2008-08       Impact factor: 4.254

8.  Successful strategies for increasing African American participation in cancer genetic studies: hopeful signs for equalizing the benefits of genetic medicine.

Authors:  Annette R Patterson; Helen Davis; Kristin Shelby; Jerry McCoy; Linda D Robinson; Smita K Rao; Pia Banerji; Gail E Tomlinson
Journal:  Community Genet       Date:  2008-04-14

9.  Recruitment of three generations of African American women into genetics research.

Authors:  Jacquelyn Y Taylor
Journal:  J Transcult Nurs       Date:  2009-01-07       Impact factor: 1.959

10.  Genome-wide linkage scan in Gullah-speaking African American families with type 2 diabetes: the Sea Islands Genetic African American Registry (Project SuGAR).

Authors:  Michèle M Sale; Lingyi Lu; Ida J Spruill; Jyotika K Fernandes; Kerry H Lok; Jasmin Divers; Carl D Langefeld; W Timothy Garvey
Journal:  Diabetes       Date:  2008-10-03       Impact factor: 9.461

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  12 in total

1.  Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral.

Authors:  E van Riel; S van Dulmen; M G E M Ausems
Journal:  J Community Genet       Date:  2012-03-17

2.  Cardiovascular risk in Gullah African Americans with high familial risk of type 2 diabetes mellitus: project SuGAR.

Authors:  Kelly J Hunt; Emily Kistner-Griffin; Ida Spruill; Abeba A Teklehaimanot; W Timothy Garvey; Michèle Sale; Jyotika Fernandes
Journal:  South Med J       Date:  2014-10       Impact factor: 0.954

3.  Understanding participation by African Americans in cancer genetics research.

Authors:  Jasmine A McDonald; Frances K Barg; Benita Weathers; Carmen E Guerra; Andrea B Troxel; Susan Domchek; Deborah Bowen; Judy A Shea; Chanita Hughes Halbert
Journal:  J Natl Med Assoc       Date:  2012 Jul-Aug       Impact factor: 1.798

4.  Socioeconomic determinants associated with willingness to participate in medical research among a diverse population.

Authors:  Katherine Svensson; Olivia F Ramírez; Frederico Peres; Mallory Barnett; Luz Claudio
Journal:  Contemp Clin Trials       Date:  2012-08-04       Impact factor: 2.226

5.  Recruitment of black subjects for a natural history study of intracerebral hemorrhage.

Authors:  Dorothy F Edwards; Ravi Menon; Ali Fokar; Christopher Gibbons; Jeffrey Wing; Brisa Sanchez; Chelsea S Kidwell
Journal:  J Health Care Poor Underserved       Date:  2013-02

6.  Strategies for enrollment of African Americans into cancer genetic studies.

Authors:  Altovise Ewing; Nicole Thompson; Luisel Ricks-Santi
Journal:  J Cancer Educ       Date:  2015-03       Impact factor: 2.037

7.  Are enrollment sites the key to optimizing participation in genetic studies?

Authors:  Gert Helgesson
Journal:  Genome Med       Date:  2011-06-28       Impact factor: 11.117

8.  Recruitment of Yoruba families from Nigeria for genetic research: experience from a multisite keloid study.

Authors:  Peter B Olaitan; Victoria Odesina; Samuel Ademola; Solomon O Fadiora; Odunayo M Oluwatosin; Ernst J Reichenberger
Journal:  BMC Med Ethics       Date:  2014-09-02       Impact factor: 2.652

9.  Sociocultural variation in attitudes toward use of genetic information and participation in genetic research by race in the United States: implications for precision medicine.

Authors:  Timothy Dye; Dongmei Li; Margaret Demment; Susan Groth; Diana Fernandez; Ann Dozier; Jack Chang
Journal:  J Am Med Inform Assoc       Date:  2016-03-16       Impact factor: 4.497

10.  Challenges in recruiting African-American women for a breast cancer genetics study.

Authors:  Amanda J Compadre; Melinda E Simonson; Katy Gray; Gail Runnells; Susan Kadlubar; Kristin K Zorn
Journal:  Hered Cancer Clin Pract       Date:  2018-04-24       Impact factor: 2.857

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