scholarly journals A multi-animal model collaboration to speed up rare disease research

Lab Animal ◽  
2019 ◽  
Vol 48 (10) ◽  
pp. 271-271
Author(s):  
Elizabeth Doughman
2014 ◽  
Vol 3 (4) ◽  
pp. 325-335 ◽  
Author(s):  
Matthew I. Bellgard ◽  
Mark W. Sleeman ◽  
Felix D. Guerrero ◽  
Sue Fletcher ◽  
Gareth Baynam ◽  
...  

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Linfeng Zou ◽  
Yun Zhang ◽  
Ying Wang ◽  
Lei Zhang ◽  
Peng Xia ◽  
...  

Abstract Background and Aims Doctors are exposed to high levels of stress in their profession and are particularly susceptible to experiencing burnout. Rare disease researches are enlightening, with more workload to clinicians, especially during the Covid-19 pandemic. We aim to explore the mental influence of participating in rare disease researches on clinicians. Method Doctors received electronic questionnaires regarding job-burnout in October 2020. The modified Maslach Burnout Inventory-General Survey (MBI-GS) was used to evaluate job burnout state. The MBI-GS consisting of three dimensions, emotional exhaustion (five questions), cynicism (five questions), and reduced personal accomplishment (six questions). The 7-grade Likert scale is adopted in each question, from 0 point (never) to 6 points (very frequently). Job burnout was considered if the average score of any dimension is no less than three.  Results Questionnaires from all 203 doctors were analysed in this study, with females (70.0%, n=140). Age ranging from 25 to 39, 40 to 54, and above 55 were 41.4%, 50.7%, 7.9%, respectively. Nearly half of the subjects (50.2%, n=102) fulfil the definition of job-burnout, which was fewer than that in the residency program (50.2% vs. 62.9%, p=0.02). An inappropriate evaluation system (36.0%) and lack of private time (35.5%) were the leading cause of job-burnout. The pressure of scientific researches (79.3%) and career promotion (58.1%) was the major source of mental pressure. Doctors who participated in rare disease researches (46.8%, n=95) did not show significant differences in burnout rate than individuals who did not (44.2% vs 55.6%, p=0.123), nor as in three dimensions (27.3% vs 36.1%, p=0.183 for emotional exhaustion, 21.1% vs 20.4%, p=0.905 for cynicism, 21.1% vs 27.8%, p=0.267 for reduced personal accomplishment). Logistic analysis revealed that high requirement from superior (22.5% vs 6.9%, p= 0.001), pressure from family (33.3% vs 17.8%, p=0.010), inappropriate job allocation (47.1% vs 29.7%, p= 0.019) as well as delayed off-work time (p=0.013) were independent risk factors of job-burnout. Physicians who participate in rare disease research had better job allocation (75.8% vs. 49.1%, p<0.001), but not in the other three risk factors.  Conclusion More workload did not increase the job-burnout of physicians participating in the rare disease research, which might be contributed by the appropriate job allocation.


Author(s):  
Rajaram Kaliyaperumal ◽  
Núria Queralt Rosinach ◽  
Kees Burger ◽  
Luiz Olavo Bonino da Silva Santos ◽  
Marc Hanauer ◽  
...  

Background: Integration of heterogenous resources is key for Rare Disease research. Within the EJP RD, common Application Programming Interface specifications are proposed for discovery of resources and data records. This is not sufficient for automated processing between RD resources and meeting the FAIR principles. Objective: To design a solution to improve FAIR for machines for the EJP RD API specification. Methods: A FAIR Data Point is used to expose machine-actionable metadata of digital resources and it is configured to store its content to a semantic database to be FAIR at the source. Results: A solution was designed based on grlc server as middleware to implement the EJP RD API specification on top of the FDP. Conclusion: grlc reduces potential API implementation overhead faced by maintainers who use FAIR at the source.


2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Katie Kerr ◽  
Helen McAneney ◽  
Laura J. Smyth ◽  
Caitlin Bailie ◽  
Shane McKee ◽  
...  

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