Literature DB >> 27703145

Biobank attributes associated with higher patient participation: a randomized study.

Angèle Gayet-Ageron1, Sandrine Rudaz2, Thomas Perneger2.   

Abstract

The objectives of the study were to assess patients' intent to participate in a hospital-based biobank and to explore the factors associated with higher participation. A 23-item questionnaire was developed to survey a random sample of patients in a Swiss university hospital. Two vignettes describing hypothetical biobanks were incorporated in the survey and patients were asked whether they would agree to participate. Three factors were randomly manipulated in each vignette using a factorial design: cancer-oriented research vs general consent, one vs several reviews of the patient's chart, and genetic vs blood protein analyses (first vignette); blood sample vs oral swabbing, local vs international project, and a follow-up visit vs no visit (second vignette). Of the 1140 respondents, 73.6 and 69.6%, respectively, agreed to participate in the biobank. Biospecimen collection via oral swabbing, single chart review, and no follow-up were associated with higher participation. Participation was also higher among younger patients, Europeans, patients who had a positive opinion on research, and blood/organ donors. Biobanking was supported by a majority of patients, especially if biospecimens were collected through non-invasive techniques or if data collection was done once. The scope of consent, the scale of the project, or the tests performed on biospecimens did not influence participation.

Entities:  

Mesh:

Year:  2016        PMID: 27703145      PMCID: PMC5159767          DOI: 10.1038/ejhg.2016.132

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  8 in total

1.  Facilitators and barriers to successful recruitment into a large comparative effectiveness trial: a qualitative study.

Authors:  Stephanie Behringer-Massera; Terysia Browne; Geny George; Sally Duran; Andrea Cherrington; M Diane McKee
Journal:  J Comp Eff Res       Date:  2019-08-01       Impact factor: 1.744

2.  PIRATE project: point-of-care, informatics-based randomised controlled trial for decreasing overuse of antibiotic therapy in Gram-negative bacteraemia.

Authors:  Angela Huttner; Werner C Albrich; Pierre-Yves Bochud; Angèle Gayet-Ageron; Anne Rossel; Elodie von Dach; Stephan Harbarth; Laurent Kaiser
Journal:  BMJ Open       Date:  2017-07-13       Impact factor: 2.692

3.  Community recommendations on biobank governance: Results from a deliberative community engagement in California.

Authors:  Sarah M Dry; Sarah B Garrett; Barbara A Koenig; Arleen F Brown; Michael M Burgess; Jen R Hult; Holly Longstaff; Elizabeth S Wilcox; Sigrid Karina Madrigal Contreras; Arturo Martinez; Elizabeth A Boyd; Daniel Dohan
Journal:  PLoS One       Date:  2017-02-24       Impact factor: 3.240

4.  Attitudes of blood donors to their sample and data donation for biobanking.

Authors:  Vera Raivola; Karoliina Snell; Ilpo Helén; Jukka Partanen
Journal:  Eur J Hum Genet       Date:  2019-05-30       Impact factor: 4.246

5.  Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.

Authors:  Reinder Broekstra; Judith L Aris-Meijer; Els L M Maeckelberghe; Ronald P Stolk; Sabine Otten
Journal:  Eur J Hum Genet       Date:  2021-11-22       Impact factor: 4.246

6.  Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey.

Authors:  Caroline Brall; Claudia Berlin; Marcel Zwahlen; Effy Vayena; Matthias Egger; Kelly E Ormond
Journal:  BMJ Open       Date:  2022-08-26       Impact factor: 3.006

7.  Study design factors influencing patients' willingness to participate in clinical research: a randomised vignette-based study.

Authors:  Angèle Gayet-Ageron; Sandrine Rudaz; Thomas Perneger
Journal:  BMC Med Res Methodol       Date:  2020-04-26       Impact factor: 4.615

8.  Demographic and prosocial intrapersonal characteristics of biobank participants and refusers: the findings of a survey in the Netherlands.

Authors:  Reinder Broekstra; Judith Aris-Meijer; Els Maeckelberghe; Ronald Stolk; Sabine Otten
Journal:  Eur J Hum Genet       Date:  2020-07-31       Impact factor: 4.246

  8 in total

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