Literature DB >> 24379022

Patient characteristics and participation in a genetic study: a type 2 diabetes cohort.

Loabat Amiri1, Andrea E Cassidy-Bushrow, Heather Dakki, Jia Li, Karen Wells, Susan A Oliveria, Marianne Ulcickas Yood, Abraham Thomas, David E Lanfear.   

Abstract

BACKGROUND: Recruitment of large, diverse populations into genetic studies remains challenging. Potential strategies to overcome limitations include leveraging electronic health data and minimizing patient burden. We sought to describe the overall participation rate and identify characteristics associated with participation in a genetic substudy of patients with type 2 diabetes mellitus, in which patients were identified via electronic hospital data and asked to participate by providing DNA samples by mail.
METHODS: During a phone interview, participants (n = 455) were asked to take part in a genetic substudy. Subjects verbally consenting were mailed saliva collection kits and written consent forms. We examined demographic and clinical variables associated with verbal consent and DNA kit return using logistic regression.
RESULTS: Overall, 90% (n = 410) verbally consented to the genetic substudy during interviews. However, of those consenting, only 70% returned the DNA kit (n = 287). Among those consenting, after covariate adjustment, male sex (odds ratio [OR], 1.70; 95% confidence interval [CI], 1.09-2.65), African American race (OR, 0.61; 95% CI, 0.39-0.95), hemoglobin A1c (HbA1c) (OR, 0.87; 95% CI, 0.75-1.00), and physical activity (OR, 0.58; 95% CI, 0.37-0.91) were significantly associated with DNA kit return.
CONCLUSIONS: To our knowledge, we are the first to demonstrate an inverse association between HbA1c and participation in genetic research, potentially indicating a compliance-related trait needing further exploration. The DNA kit return rate being notably lower than the verbal consent rate suggests that the greater convenience of a telephone/mail-in process did not drastically enhance full participation. Direct comparison to in-person donation may be warranted.

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Year:  2014        PMID: 24379022      PMCID: PMC3978128          DOI: 10.2310/JIM.0000000000000022

Source DB:  PubMed          Journal:  J Investig Med        ISSN: 1081-5589            Impact factor:   2.895


  32 in total

Review 1.  A systematic review of strategies that increase the recruitment and retention of African American adults in genetic and genomic studies.

Authors:  Vanessa A Johnson; Yolanda M Powell-Young; Elisa R Torres; Ida J Spruill
Journal:  ABNF J       Date:  2011

2.  Ethical issues associated with conducting genetic family studies of complex disease.

Authors:  Nedal H Arar; Helen Hazuda; Rebecca Steinbach; Mazen Y Arar; Hanna E Abboud
Journal:  Ann Epidemiol       Date:  2005-10       Impact factor: 3.797

Review 3.  Public willingness to participate in and public opinions about genetic variation research: a review of the literature.

Authors:  Rene Sterling; Gail E Henderson; Giselle Corbie-Smith
Journal:  Am J Public Health       Date:  2006-10-03       Impact factor: 9.308

4.  Consent for genetics studies among clinical trial participants: findings from Action for Health in Diabetes (Look AHEAD).

Authors:  M A Espeland; K Dotson; S A Jaramillo; S E Kahn; B Harrison; M Montez; J P Foreyt; B Montgomery; W C Knowler
Journal:  Clin Trials       Date:  2006       Impact factor: 2.486

5.  Feasibility of collecting buccal cell DNA by mail in a cohort study.

Authors:  L Le Marchand; A Lum-Jones; B Saltzman; V Visaya; A M Nomura; L N Kolonel
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2001-06       Impact factor: 4.254

6.  Do patient consent procedures affect participation rates in health services research?

Authors:  Karin Nelson; Rosa Elena Garcia; Julie Brown; Carol M Mangione; Thomas A Louis; Emmett Keeler; Shan Cretin
Journal:  Med Care       Date:  2002-04       Impact factor: 2.983

7.  Informed consent for genetic research.

Authors:  Aaron Hamvas; Katherine K Madden; Lawrence M Nogee; Michelle A Trusgnich; Daniel J Wegner; Hillary B Heins; F Sessions Cole
Journal:  Arch Pediatr Adolesc Med       Date:  2004-06

8.  Great expectations: views of genetic research participants regarding current and future genetic studies.

Authors:  Gail Henderson; Joanne Garrett; Jada Bussey-Jones; Mairead Eastin Moloney; Connie Blumenthal; Giselle Corbie-Smith
Journal:  Genet Med       Date:  2008-03       Impact factor: 8.822

9.  Attitudes of African American premedical students toward genetic testing and screening.

Authors:  Sara L Laskey; Joseph Williams; Jacqui Pierre-Louis; MaryAnn O'Riordan; Anne Matthews; Nathaniel H Robin
Journal:  Genet Med       Date:  2003 Jan-Feb       Impact factor: 8.822

10.  Consent for genetic research in a general population: the NHANES experience.

Authors:  Geraldine M McQuillan; Kathryn S Porter; Maria Agelli; Raynard Kington
Journal:  Genet Med       Date:  2003 Jan-Feb       Impact factor: 8.822

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  3 in total

1.  A comparison of views regarding the use of de-identified data.

Authors:  Deborah Goodman; Catherine O Johnson; Deborah Bowen; Megan Smith; Lari Wenzel; Karen L Edwards
Journal:  Transl Behav Med       Date:  2018-01-29       Impact factor: 3.046

2.  Evaluation of the cost and effectiveness of diverse recruitment methods for a genetic screening study.

Authors:  Hila Milo Rasouly; Julia Wynn; Maddalena Marasa; Rachel Reingold; Debanjana Chatterjee; Sheena Kapoor; Stacy Piva; Byum Hee Kil; Xueru Mu; Maria Alvarez; Jordan Nestor; Karla Mehl; Anya Revah-Politi; Natalie Lippa; Michelle E Ernst; Louise Bier; Aileen Espinal; Bianca Haser; Anoushka Sinha; Ian Halim; David Fasel; Nicole Cuneo; Jacqueline J Thompson; Miguel Verbitsky; Elizabeth G Cohn; Jill Goldman; Karen Marder; Robert L Klitzman; Manuela A Orjuela; Yat S So; Alex Fedotov; Katherine D Crew; Krzysztof Kiryluk; Paul S Appelbaum; Chunhua Weng; Karolynn Siegel; Ali G Gharavi; Wendy K Chung
Journal:  Genet Med       Date:  2019-04-01       Impact factor: 8.864

3.  Recruitment and Participation of Recreational Runners in a Large Epidemiological and Genetic Research Study: Retrospective Data Analysis.

Authors:  Silvia Manzanero; Maria Kozlovskaia; Nicole Vlahovich; David C Hughes
Journal:  JMIR Res Protoc       Date:  2018-05-23
  3 in total

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