Frontiers: Integration of a Research Participant Registry with Medical Clinic Registration and Electronic Health Records

Kluding, Patricia M.; Denton, Jo; Jamison, T. Rene; Brooks, William H.; Blackwell, Karen; Lantos, John D.; Waitman, Lemuel R.; McMahon, Tamara M.; Choudhary, A.; Bott, Marjorie J.; Greiner, Allen; Klaus, Susan; O’Brien-Ladner, Amy; Aaronson, Lauren S.; Burns, Jeffrey M.; Barohn, Richard J.

doi:10.1111/cts.12309

Cited by 11 publications

(7 citation statements)

References 15 publications

(39 reference statements)

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“…Finally, approaches involving direct patient engagement, for example building registries of patients who have agreed to be contacted, had been initially or fully implemented at a majority of our responding institutions. Positive experiences with these approaches have been described in the literature [26][27][28][29].…”

Section: Discussionmentioning

confidence: 99%

A survey of practices for the use of electronic health records to support research recruitment

Obeid

Beskow

Rape

et al. 2017

J. Clin. Trans. Sci.

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Electronic health records (EHRs) provide great promise for identifying cohorts and enhancing research recruitment. Such approaches are sorely needed, but there are few descriptions in the literature of prevailing practices to guide their use. A multidisciplinary workgroup was formed to examine current practices in the use of EHRs in recruitment and to propose future directions. The group surveyed consortium members regarding current practices. Over 98% of the Clinical and Translational Science Award Consortium responded to the survey. Brokered and self-service data warehouse access are in early or full operation at 94% and 92% of institutions, respectively, whereas, EHR alerts to providers and to research teams are at 45% and 48%, respectively, and use of patient portals for research is at 20%. However, these percentages increase significantly to 88% and above if planning and exploratory work were considered cumulatively. For most approaches, implementation reflected perceived demand. Regulatory and workflow processes were similarly varied, and many respondents described substantive restrictions arising from logistical constraints and limitations on collaboration and data sharing. Survey results reflect wide variation in implementation and approach, and point to strong need for comparative research and development of best practices to protect patients and facilitate interinstitutional collaboration and multisite research.

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Section: Discussionmentioning

confidence: 99%

A survey of practices for the use of electronic health records to support research recruitment

Obeid

Beskow

Rape

et al. 2017

J. Clin. Trans. Sci.

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“…Participants were recruited through University Research Center's Frontiers research subject registry [19], Cray Diabetes clinic, and campus advertisements, as well as through flyers distributed to the surrounding community. The study was approved by the University Research Center's Institutional Review Board.…”

Section: Data Collection Proceduresmentioning

confidence: 99%

Daytime Functioning in People with Type 2 Diabetes and Insomnia Symptoms: A Comparison-Correlational Study

Alshehri¹,

Rucker²,

Alenazi³

et al. 2020

Preprint

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Background Sleep disturbances showed negative impact on self-care and diabetes outcomes for people with type 2 diabetes. However, there is a need to understand to what extent insomnia symptoms impact daytime functioning in people with type 2 diabetes. This study compared common daytime functioning outcomes including fatigue, daytime sleepiness, and quality of life related to vitality and physical function in people with type 2 diabetes with and without insomnia symptoms. Methods This study was a cross-sectional comparison design which used validated instruments to assess common daytime functioning outcomes (i.e. fatigue severity scale, daytime sleepiness, and quality of life related to vitality and physical function domains) in 60 participants with type 2 diabetes with and without symptoms of insomnia. Insomnia Severity Index was used to stratify participants into an insomnia group and non-insomnia control group. Multivariate linear model and partial correlations tests were utilized to examine the relationships between outcomes in the two groups after controlling for age and depression symptoms. Results Levels of fatigue severity, and quality of life related vitality and physical function were worse in the insomnia group compared to non-insomnia group (P<.004). After controlling for age, the multivariate linear model showed that the insomnia group had greater fatigue severity (R 2 =0.15, p=.003), and lower quality of life related to vitality and physical function (R 2 =0.25, p<.001; and R 2 =0.11, p=.004, respectively). Partial correlation showed that daytime sleepiness was correlated with Insomnia Severity Index in the full sample after controlling for age ( r =.35, p =.006). When added depression symptoms into the models, the differences or relationships were not observed. Conclusion Fatigue, and quality of life related vitality and physical function were worse in people with both type 2 diabetes and insomnia symptoms compared to people with type 2 diabetes only. Depression symptoms may have an independent contribution for the daytime functioning.

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“…This experience was recently published by Dr. Kluding and colleagues from Frontiers. 15 Pioneers Another solution we have developed is the Pioneers Community Research Recruitment Registry, which also was developed in our NIH CTSA Frontiers program. The Pioneers Community Research Recruitment Registry was launched in September 2013.…”

Section: Barriers/essentials To Doing Multicenter Trials: Recruitmentmentioning

confidence: 99%

Barriers to Clinica and Translational Research & Challengers of Investigator Initiated Multi-Center Clinical Trials

Barohn¹,

Herbelin²

2015

merrill

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Medical Center e have identified 10 barriers to overcome to conduct clinical translational research: 1) an idea, 2) interest/desire, 3) talent, 4) training, 5) time, 6) a team, 7) regulatory support, 8) space, 9) money and 10) subjects or study participants. We discuss the essential elements in overcoming these barriers, including programs initiated at KUMC for training and conducting clinical translational research. We also discuss challenges related to organizing and running a multicenter investigator initiated trial.

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Frontiers: Integration of a Research Participant Registry with Medical Clinic Registration and Electronic Health Records

Cited by 11 publications

References 15 publications

A survey of practices for the use of electronic health records to support research recruitment

A survey of practices for the use of electronic health records to support research recruitment

Daytime Functioning in People with Type 2 Diabetes and Insomnia Symptoms: A Comparison-Correlational Study

Barriers to Clinica and Translational Research & Challengers of Investigator Initiated Multi-Center Clinical Trials

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