Characteristics Associated With Recruitment and Re-contact in Mayo Clinic Biobank
Objective: To better understand the characteristics associated with a participant's willingness to consent to the Mayo Clinic Biobank (MCB) and examine factors associated with willingness to participate in follow-up studies embedded within MCB that require re-contact and participant approval.Pa...
| Main Authors: | , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2020-02-01
|
| Series: | Frontiers in Public Health |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/article/10.3389/fpubh.2020.00009/full |
| _version_ | 1819266256385081344 |
|---|---|
| author | Matthew A. Hathcock Christine Kirt Euijung Ryu Josh Bublitz Ruchi Gupta Liwei Wang Stephen N. Thibodeau Nicole L. Larson Mine S. Cicek James R. Cerhan Janet E. Olson |
| author_facet | Matthew A. Hathcock Christine Kirt Euijung Ryu Josh Bublitz Ruchi Gupta Liwei Wang Stephen N. Thibodeau Nicole L. Larson Mine S. Cicek James R. Cerhan Janet E. Olson |
| author_sort | Matthew A. Hathcock |
| collection | DOAJ |
| description | Objective: To better understand the characteristics associated with a participant's willingness to consent to the Mayo Clinic Biobank (MCB) and examine factors associated with willingness to participate in follow-up studies embedded within MCB that require re-contact and participant approval.Participants and Methods: Consent rates were compared across patient demographics to the MCB. Rates of participation to follow-up studies were also compared across demographics and request types.Results: Among 272,102 Mayo Clinic patients invited to the MCB, 48,314 (19%) consented across the three recruitment sites within 90 days of initial invitation. A significant age by gender interaction was identified, showing young males consent at a lower rate than young females and older males consent at a higher rate than older females. Over the recruitment time frame of 2009–2015, there was a significant decrease in consent rates (decline of 2.5%/year). Of the 57,041 consented MCB participants, 33,487 participants (59%) have been invited to participate in follow-up studies via re-contact. Follow-up studies of the MCB may require participants to provide additional samples, complete questionnaires, and/or release their identity to a research team. MCB participants have been invited to enroll in a median of two studies (IQR: 1–3). Seventy-one percent of participants consented to at least one follow-up study, with individual follow-up study consent rates ranging from 14 to 87% depending on study type, with a median consent rate of 61% (IQR: 47–70%). Studies requesting return of a questionnaire had the highest participation rates. White participants, older participants, and participants with some college or a degree were significantly more likely to participate to follow-up studies, while there was no association with gender.Conclusion: Consent rates among younger and non-white patients were lower than in older, white patients. However, we also found that participation rates among those already enrolled in the biobank were much higher than those seen in new recruitment efforts, external to an existing biobank. We thus demonstrate an important way that biobanks can advance precision medicine goals: through provision of populations from which studies can draw participants for future studies. |
| first_indexed | 2024-12-23T20:58:23Z |
| format | Article |
| id | doaj.art-f373a35bb099415383eed3f43d831d90 |
| institution | Directory Open Access Journal |
| issn | 2296-2565 |
| language | English |
| last_indexed | 2024-12-23T20:58:23Z |
| publishDate | 2020-02-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Public Health |
| spelling | doaj.art-f373a35bb099415383eed3f43d831d902022-12-21T17:31:28ZengFrontiers Media S.A.Frontiers in Public Health2296-25652020-02-01810.3389/fpubh.2020.00009509141Characteristics Associated With Recruitment and Re-contact in Mayo Clinic BiobankMatthew A. Hathcock0Christine Kirt1Euijung Ryu2Josh Bublitz3Ruchi Gupta4Liwei Wang5Stephen N. Thibodeau6Nicole L. Larson7Mine S. Cicek8James R. Cerhan9Janet E. Olson10Division of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesDivision of Epidemiology, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesDivision of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesDivision of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesDivision of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesDivision of Digital Health Sciences, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesDepartment of Laboratory Medicine and Pathology, Mayo Clinic, Rochester, MN, United StatesDivision of Epidemiology, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesDepartment of Laboratory Medicine and Pathology, Mayo Clinic, Rochester, MN, United StatesDivision of Epidemiology, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesDivision of Epidemiology, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, United StatesObjective: To better understand the characteristics associated with a participant's willingness to consent to the Mayo Clinic Biobank (MCB) and examine factors associated with willingness to participate in follow-up studies embedded within MCB that require re-contact and participant approval.Participants and Methods: Consent rates were compared across patient demographics to the MCB. Rates of participation to follow-up studies were also compared across demographics and request types.Results: Among 272,102 Mayo Clinic patients invited to the MCB, 48,314 (19%) consented across the three recruitment sites within 90 days of initial invitation. A significant age by gender interaction was identified, showing young males consent at a lower rate than young females and older males consent at a higher rate than older females. Over the recruitment time frame of 2009–2015, there was a significant decrease in consent rates (decline of 2.5%/year). Of the 57,041 consented MCB participants, 33,487 participants (59%) have been invited to participate in follow-up studies via re-contact. Follow-up studies of the MCB may require participants to provide additional samples, complete questionnaires, and/or release their identity to a research team. MCB participants have been invited to enroll in a median of two studies (IQR: 1–3). Seventy-one percent of participants consented to at least one follow-up study, with individual follow-up study consent rates ranging from 14 to 87% depending on study type, with a median consent rate of 61% (IQR: 47–70%). Studies requesting return of a questionnaire had the highest participation rates. White participants, older participants, and participants with some college or a degree were significantly more likely to participate to follow-up studies, while there was no association with gender.Conclusion: Consent rates among younger and non-white patients were lower than in older, white patients. However, we also found that participation rates among those already enrolled in the biobank were much higher than those seen in new recruitment efforts, external to an existing biobank. We thus demonstrate an important way that biobanks can advance precision medicine goals: through provision of populations from which studies can draw participants for future studies.https://www.frontiersin.org/article/10.3389/fpubh.2020.00009/fullbiobanksconsentparticipationrecruitmentfollow-up study |
| spellingShingle | Matthew A. Hathcock Christine Kirt Euijung Ryu Josh Bublitz Ruchi Gupta Liwei Wang Stephen N. Thibodeau Nicole L. Larson Mine S. Cicek James R. Cerhan Janet E. Olson Characteristics Associated With Recruitment and Re-contact in Mayo Clinic Biobank Frontiers in Public Health biobanks consent participation recruitment follow-up study |
| title | Characteristics Associated With Recruitment and Re-contact in Mayo Clinic Biobank |
| title_full | Characteristics Associated With Recruitment and Re-contact in Mayo Clinic Biobank |
| title_fullStr | Characteristics Associated With Recruitment and Re-contact in Mayo Clinic Biobank |
| title_full_unstemmed | Characteristics Associated With Recruitment and Re-contact in Mayo Clinic Biobank |
| title_short | Characteristics Associated With Recruitment and Re-contact in Mayo Clinic Biobank |
| title_sort | characteristics associated with recruitment and re contact in mayo clinic biobank |
| topic | biobanks consent participation recruitment follow-up study |
| url | https://www.frontiersin.org/article/10.3389/fpubh.2020.00009/full |
| work_keys_str_mv | AT matthewahathcock characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT christinekirt characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT euijungryu characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT joshbublitz characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT ruchigupta characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT liweiwang characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT stephennthibodeau characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT nicolellarson characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT minescicek characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT jamesrcerhan characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank AT janeteolson characteristicsassociatedwithrecruitmentandrecontactinmayoclinicbiobank |