Attitudes toward Potential Participant Registries

Joshua D. Grill, Andrew Holbrook, Aimee Pierce, Dan Hoang, Daniel L. Gillen

Research output: Contribution to journalArticle

3 Citations (Scopus)

Abstract

Difficult participant recruitment is a consistent barrier to successful medical research. Potential participant registries represent an increasingly common intervention to overcome this barrier. A variety of models for registries exist, but few data are available to instruct their design and implementation. To provide such data, we surveyed 110 cognitively normal research participants enrolled in a longitudinal study of aging and dementia. Seventy-four (67) individuals participated in the study. Most (78, CI: 0.67, 0.87) participants were likely to enroll in a registry. Willingness to participate was reduced for registries that required enrollment through the Internet using a password (26, CI: 0.16, 0.36) or through email (38, CI: 0.27, 0.49). Respondents acknowledged their expectations that researchers share information about their health and risk for disease and their concerns that their data could be shared with for-profit companies. We found no difference in respondent preferences for registries that shared contact information with researchers, compared to honest broker models that take extra precautions to protect registrant confidentiality (28 versus 30; p 0.46). Compared to those preferring a shared information model, respondents who preferred the honest broker model or who lacked model preference voiced increased concerns about sharing registrant data, especially with for-profit organizations. These results suggest that the design of potential participant registries may impact the population enrolled, and hence the population that will eventually be enrolled in clinical studies. Investigators operating registries may need to offer particular assurances about data security to maximize registry enrollment but also must carefully manage participant expectations.

Original languageEnglish (US)
Pages (from-to)939-946
Number of pages8
JournalJournal of Alzheimer's Disease
Volume56
Issue number3
DOIs
StatePublished - Jan 1 2017
Externally publishedYes

Fingerprint

Registries
Research Personnel
Computer Security
Information Dissemination
Confidentiality
Internet
Population
Longitudinal Studies
Dementia
Biomedical Research
Organizations
Health
Research
Surveys and Questionnaires

Keywords

  • Clinical trial
  • recruitment
  • registries

ASJC Scopus subject areas

  • Neuroscience(all)
  • Clinical Psychology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health

Cite this

Attitudes toward Potential Participant Registries. / Grill, Joshua D.; Holbrook, Andrew; Pierce, Aimee; Hoang, Dan; Gillen, Daniel L.

In: Journal of Alzheimer's Disease, Vol. 56, No. 3, 01.01.2017, p. 939-946.

Research output: Contribution to journalArticle

Grill, JD, Holbrook, A, Pierce, A, Hoang, D & Gillen, DL 2017, 'Attitudes toward Potential Participant Registries', Journal of Alzheimer's Disease, vol. 56, no. 3, pp. 939-946. https://doi.org/10.3233/JAD-160873
Grill, Joshua D. ; Holbrook, Andrew ; Pierce, Aimee ; Hoang, Dan ; Gillen, Daniel L. / Attitudes toward Potential Participant Registries. In: Journal of Alzheimer's Disease. 2017 ; Vol. 56, No. 3. pp. 939-946.
@article{aef50211170149f7a145d00c3348e32c,
title = "Attitudes toward Potential Participant Registries",
abstract = "Difficult participant recruitment is a consistent barrier to successful medical research. Potential participant registries represent an increasingly common intervention to overcome this barrier. A variety of models for registries exist, but few data are available to instruct their design and implementation. To provide such data, we surveyed 110 cognitively normal research participants enrolled in a longitudinal study of aging and dementia. Seventy-four (67) individuals participated in the study. Most (78, CI: 0.67, 0.87) participants were likely to enroll in a registry. Willingness to participate was reduced for registries that required enrollment through the Internet using a password (26, CI: 0.16, 0.36) or through email (38, CI: 0.27, 0.49). Respondents acknowledged their expectations that researchers share information about their health and risk for disease and their concerns that their data could be shared with for-profit companies. We found no difference in respondent preferences for registries that shared contact information with researchers, compared to honest broker models that take extra precautions to protect registrant confidentiality (28 versus 30; p 0.46). Compared to those preferring a shared information model, respondents who preferred the honest broker model or who lacked model preference voiced increased concerns about sharing registrant data, especially with for-profit organizations. These results suggest that the design of potential participant registries may impact the population enrolled, and hence the population that will eventually be enrolled in clinical studies. Investigators operating registries may need to offer particular assurances about data security to maximize registry enrollment but also must carefully manage participant expectations.",
keywords = "Clinical trial, recruitment, registries",
author = "Grill, {Joshua D.} and Andrew Holbrook and Aimee Pierce and Dan Hoang and Gillen, {Daniel L.}",
year = "2017",
month = "1",
day = "1",
doi = "10.3233/JAD-160873",
language = "English (US)",
volume = "56",
pages = "939--946",
journal = "Journal of Alzheimer's Disease",
issn = "1387-2877",
publisher = "IOS Press",
number = "3",

}

TY - JOUR

T1 - Attitudes toward Potential Participant Registries

AU - Grill, Joshua D.

AU - Holbrook, Andrew

AU - Pierce, Aimee

AU - Hoang, Dan

AU - Gillen, Daniel L.

PY - 2017/1/1

Y1 - 2017/1/1

N2 - Difficult participant recruitment is a consistent barrier to successful medical research. Potential participant registries represent an increasingly common intervention to overcome this barrier. A variety of models for registries exist, but few data are available to instruct their design and implementation. To provide such data, we surveyed 110 cognitively normal research participants enrolled in a longitudinal study of aging and dementia. Seventy-four (67) individuals participated in the study. Most (78, CI: 0.67, 0.87) participants were likely to enroll in a registry. Willingness to participate was reduced for registries that required enrollment through the Internet using a password (26, CI: 0.16, 0.36) or through email (38, CI: 0.27, 0.49). Respondents acknowledged their expectations that researchers share information about their health and risk for disease and their concerns that their data could be shared with for-profit companies. We found no difference in respondent preferences for registries that shared contact information with researchers, compared to honest broker models that take extra precautions to protect registrant confidentiality (28 versus 30; p 0.46). Compared to those preferring a shared information model, respondents who preferred the honest broker model or who lacked model preference voiced increased concerns about sharing registrant data, especially with for-profit organizations. These results suggest that the design of potential participant registries may impact the population enrolled, and hence the population that will eventually be enrolled in clinical studies. Investigators operating registries may need to offer particular assurances about data security to maximize registry enrollment but also must carefully manage participant expectations.

AB - Difficult participant recruitment is a consistent barrier to successful medical research. Potential participant registries represent an increasingly common intervention to overcome this barrier. A variety of models for registries exist, but few data are available to instruct their design and implementation. To provide such data, we surveyed 110 cognitively normal research participants enrolled in a longitudinal study of aging and dementia. Seventy-four (67) individuals participated in the study. Most (78, CI: 0.67, 0.87) participants were likely to enroll in a registry. Willingness to participate was reduced for registries that required enrollment through the Internet using a password (26, CI: 0.16, 0.36) or through email (38, CI: 0.27, 0.49). Respondents acknowledged their expectations that researchers share information about their health and risk for disease and their concerns that their data could be shared with for-profit companies. We found no difference in respondent preferences for registries that shared contact information with researchers, compared to honest broker models that take extra precautions to protect registrant confidentiality (28 versus 30; p 0.46). Compared to those preferring a shared information model, respondents who preferred the honest broker model or who lacked model preference voiced increased concerns about sharing registrant data, especially with for-profit organizations. These results suggest that the design of potential participant registries may impact the population enrolled, and hence the population that will eventually be enrolled in clinical studies. Investigators operating registries may need to offer particular assurances about data security to maximize registry enrollment but also must carefully manage participant expectations.

KW - Clinical trial

KW - recruitment

KW - registries

UR - http://www.scopus.com/inward/record.url?scp=85011593477&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85011593477&partnerID=8YFLogxK

U2 - 10.3233/JAD-160873

DO - 10.3233/JAD-160873

M3 - Article

VL - 56

SP - 939

EP - 946

JO - Journal of Alzheimer's Disease

JF - Journal of Alzheimer's Disease

SN - 1387-2877

IS - 3

ER -