A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization

Sakurai-Yageta, Mika; Kawame, Hiroshi; Kuriyama, Shinichi; Hozawa, Atsushi; Nakaya, Naoki; Nagami, Fuji; Minegishi, Naoko; Ogishima, Soichi; Toda, Takako; Danjoh, Inaho; Obara, Taku; Ishikuro, Mami; Kobayashi, Tomoko; Aizawa, Yayoi; Ishihara, Rino; Yamamoto, Masayuki; Suzuki, Yôichi

doi:10.1186/s12909-019-1725-5

Cited by 9 publications

(6 citation statements)

References 15 publications

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“…Subsequently, a clinician provided supplementary information and answered questions raised by the seminar participants. Written informed consent was obtained from the seminar participants by the genome medical research coordinators, who underwent specialized training through ToMMo (31) . All the seminar participants consented to participate in the study.…”

Section: Resultsmentioning

confidence: 99%

A Pilot Study for Return of Individual Pharmacogenomic Results to Population-Based Cohort Study Participants

Ohneda

Hiratsuka

Kawame

et al. 2022

JMA J

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Introduction: Pharmacogenomic (PGx) testing results provide valuable information on drug selection and appropriate dosing, maximization of efficacy, and minimization of adverse effects. Although the number of large-scale, next-generation-sequencing-based PGx studies has recently increased, little is known about the risks and benefits of returning PGx results to ostensibly healthy individuals in research settings. Methods: Single-nucleotide variants of three actionable PGx genes, namely, MT-RNR1 , CYP2C19 , and NUDT15 , were returned to 161 participants in a population-based Tohoku Medical Megabank project. Informed consent was obtained from the participants after a seminar on the outline of this study. The results were sent by mail alongside sealed information letter intended for clinicians. As an exception, genetic counseling was performed for the MT-RNR1 m.1555A > G variant carriers by a medical geneticist, and consultation with an otolaryngologist was encouraged. Questionnaire surveys (QSs) were conducted five times to evaluate the participants’ understanding of the topic, psychological impact, and attitude toward the study. Results: Whereas the majority of participants were unfamiliar with the term PGx, and none had undergone PGx testing before the study, more than 80% of the participants felt that they could acquire basic PGx knowledge sufficient to understand their genomic results and were satisfied with their potential benefit and use in future prescriptions. On the other hand, some felt that the PGx concepts or terminology was difficult to fully understand and suggested that in-person return of the results was desirable. Conclusions: These results collectively suggest possible benefits of returning preemptive PGx information to ostensibly healthy cohort participants in a research setting.

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Section: Resultsmentioning

confidence: 99%

A Pilot Study for Return of Individual Pharmacogenomic Results to Population-Based Cohort Study Participants

Ohneda

Hiratsuka

Kawame

et al. 2022

JMA J

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“…Second, the Run4Love intervention combined both offline interactions, between researchers and participants at baseline and 3, 6, and 9 months, and web-based interactions, such as reminders for course completion and 5 phone calls at 1 week and 1, 2, 5, and 8 months from baseline. A trusting relationship between participants and researchers was built at the beginning of the program and maintained over time, which was critical for the success of the intervention [ 49 ]. Third, continuous process monitoring ensured a satisfactory level of patient engagement, which is essential for the effectiveness of an mHealth intervention [ 50 ].…”

Section: Discussionmentioning

confidence: 99%

Long-term Effects of a Social Media–Based Intervention (Run4Love) on Depressive Symptoms of People Living With HIV: 3-Year Follow-up of a Randomized Controlled Trial

Guo¹,

Li²,

Yu³

et al. 2022

J Med Internet Res

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Background Emerging studies have shown the effectiveness of mobile health (mHealth) interventions in reducing depressive symptoms among people living with HIV. Most of these studies included only short-term follow-up, with limited data on long-term effects. Objective The purpose of this study is to assess the long-term effects of a randomized controlled trial called Run4Love on depressive symptoms among people living with HIV at 1-year and 3-year follow-ups. Methods A total of 300 people living with HIV with depressive symptoms were recruited and randomized to an intervention or a control group in Guangzhou, China, from September 2017 to January 2018. The intervention group received a 3-month Run4Love program, including adapted evidence-based cognitive behavioral stress management courses and exercise promotion via WeChat (Tencent), a popular social media app. The control group received usual care and a brochure on nutrition. The primary outcome was reduction in depressive symptoms, measured using the Center for Epidemiological Studies–Depression (CES-D) scale. Data used in this study were collected at baseline and at the 1-year and 3-year follow-ups. Generalized estimating equations were used to examine the group differences at 1-year and 3-year follow-ups. Results Approximately half of the participants completed the assessment at 1-year (149/300, 49.7%) and 3-year (177/300, 59%) follow-ups. At 1-year follow-up, participants in the intervention group reported significant reduction in depressive symptoms compared with the control group (CES-D: from 23.9 to 18.1 in the intervention group vs from 24.3 to 23.3 in the control group; mean −4.79, SD 13.56; 95% CI −7.78 to −1.81; P=.002). At 3-year follow-up, between-group difference in CES-D remained statistically significant (from 23.9 to 20.5 in the intervention group vs from 24.3 to 24.4 in the control group; mean −3.63, SD 13.35; 95% CI −6.71 to −0.54; P=.02). No adverse events were reported during the 3-year follow-up period. Conclusions The mHealth intervention, Run4Love, significantly reduced depressive symptoms among people living with HIV, and the intervention effects were sustained at 1-year and 3-year follow-ups. Further research is needed to explore the mechanisms of the long-term effects of mHealth interventions such as Run4Love and to implement these effective interventions among people living with HIV. Trial Registration Chinese Clinical Trial Registry ChiCTR-IPR-17012606; https://trialsearch.who.int/Trial2.aspx?TrialID=ChiCTR-IPR-17012606 International Registered Report Identifier (IRRID) RR2-10.2196/10274

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“…Trained GMRC are assigned to the community support centers to collect signed informed consent forms and to conduct physical examinations and collect biological specimens from each participant. The licences of the GMRC have been certified by the Japan Society of Human Genetics and by ToMMo (Sakurai-Yageta et al 2019). Approximately half of the ToMMo GMRC are qualified nurses or clinical laboratory technicians.…”

Section: Constructing An Efficient and Integrated Health Assessments ...mentioning

confidence: 99%

Design and Progress of Child Health Assessments at Community Support Centers in the Birth and Three-Generation Cohort Study of the Tohoku Medical Megabank Project

Kobayashi

Minegishi

et al. 2023

Tohoku J. Exp. Med.

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The Tohoku Medical Megabank Project (TMM) has been conducting a birth and threegeneration cohort study (the BirThree Cohort Study). We recruited 73,529 pregnant women and their family members for this cohort study, which included 23,143 newborns and 9,459 of their siblings. We designed and are in the process of conducting three-step health assessments for each newborn at approximately ages of 5, 10 and 16. These health assessments are administered at seven community support centers. Trained genome medical research coordinators conduct physical examinations of and collect biological specimens from each participant. The Sendai Children's Health Square has been established as the headquarters for these child health assessments and is utilized to accumulate knowledge that can facilitate the proper practice of child health assessments. We designed all the relevant health assessments facilities to allow parents and their children to participate in the health assessments concomitantly. Our centers serve as places where child participants and their parents can feel at ease as a result of the implementation of safety measures and child hospitality measures. The TMM BirThree Cohort Study is in the process of conducting strategically detailed health assessments and genome analysis, which can facilitate studies concerning the gene-environment interactions relevant to noncommunicable diseases.Through these operations, our study allows for a significant depth of data to be collected in terms of the number of biospecimens under study and the comprehensiveness of both basic and clinical data alongside relevant family information.

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A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization

Cited by 9 publications

References 15 publications

A Pilot Study for Return of Individual Pharmacogenomic Results to Population-Based Cohort Study Participants

A Pilot Study for Return of Individual Pharmacogenomic Results to Population-Based Cohort Study Participants

Long-term Effects of a Social Media–Based Intervention (Run4Love) on Depressive Symptoms of People Living With HIV: 3-Year Follow-up of a Randomized Controlled Trial

Design and Progress of Child Health Assessments at Community Support Centers in the Birth and Three-Generation Cohort Study of the Tohoku Medical Megabank Project

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