O-009 Data from the ESHRE PGT consortium – year 2019

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
A Van Montfoort ◽  
M De Rycke ◽  
F Carvalho ◽  
C Rubio ◽  
F Bronet ◽  
...  

Abstract text Study question Which are the trends shown in data collection XXI of the European Society of Human Reproduction and Embryology (ESHRE) PGT Consortium compared with previous years? Summary answer Data collection XXI, year 2019, represents valuable data on PGT activity in (mainly) Europe and reports on the main trends observed, being the further expansion of comprehensive testing technology in PGT-SR and PGT-A. What is known already The ESHRE PGT Consortium was set up in 1997 and from that time has been collecting data on PGT and PGT-A. The PGT database comprises the world’s largest collection of PGT / PGT-A data providing a valuable resource for data mining and for following trends in PGT practice. So far, up to the year 2015, data collections were carried out in a retrospective data way, from 2016 onwards a prospective data collection was in place. Study design, size, duration As the nature of PGT/ PGT-A treatments has changed significantly over the last years and IVF cycle management and genetic analysis techniques are getting more complex, ESHRE uses an online data collection system in which data are collected prospectively from oocyte retrieval to analysis, embryo transfer and pregnancy / live birth. Data are collected cycle by cycle on a voluntary basis. Participants/materials, settings, method For the 2019 data, individual centres (31) from 19 countries directly entered the data into the PGT database through software developed by ESHRE. Data were analysed at ESHRE headquarters and include all aspects of PGT/PGT-A cycles. Main results and the role of chance The Consortium has analysed the PGT analyses (n = 2735) performed in 2019. The indications for PGT included inherited chromosomal abnormalities (n = 253 analyses), monogenic disorders (n = 1105 analyses), aneuploidy testing for infertility (n = 1111 analyses) or combinations of the above (n = 266 analyses). In addition, 662 clinical pregnancies and 216 deliveries have been analysed in detail. The methods used for biopsy were polar body (2%), cleavage stage biopsy (35%) and blastocyst biopsy (61%; comparable with data from 2018). The methodology used for diagnosis is what is evolving most over the last years, with data set XXI (2019) showing around 7% of FISH, 37% of PCR and 55% of WGA. Within WGA 90.6% of the analysis were done using NGS, in 4.4% cases SNP arrays were used and in 2.4% array-CGH was used. The overall clinical pregnancy rate is about 24% per analysis. The baby data show that it is difficult for most centres to have a detailed follow-up. Limitations, reasons for caution The findings apply to the 31 participating centres and may not represent worldwide trends in PGT. Data were collected prospectively, but details of the follow-up on PGT pregnancies and babies born were limited. Wider implications of the findings The ESHRE PGD Consortium continues its activities as an important forum for PGT practitioners to share data and exchange experiences. The information extracted from the data collections helps to monitor quality issues in PGT and survey the introduction and effectiveness of new PGT technologies and methods.

2019 ◽  
Vol 22 (6) ◽  
pp. 769-778
Author(s):  
Carol A. Prescott ◽  
Ellen E. Walters ◽  
Thalida Em Arpawong ◽  
Catalina Zavala ◽  
Tara L. Gruenewald ◽  
...  

AbstractThe Project Talent Twin and Sibling (PTTS) study includes 4481 multiples and their 522 nontwin siblings from 2233 families. The sample was drawn from Project Talent, a U.S. national longitudinal study of 377,000 individuals born 1942–1946, first assessed in 1960 and representative of U.S. students in secondary school (Grades 9–12). In addition to the twins and triplets, the 1960 dataset includes 84,000 siblings from 40,000 other families. This design is both genetically informative and unique in facilitating separation of the ‘common’ environment into three sources of variation: shared by all siblings within a family, specific to twin-pairs, and associated with school/community-level factors. We term this the GIFTS model for genetics, individual, family, twin, and school sources of variance. In our article published in a previous Twin Research and Human Genetics special issue, we described data collections conducted with the full Project Talent sample during 1960–1974, methods for the recent linking of siblings within families, identification of twins, and the design of a 54-year follow-up of the PTTS sample, when participants were 68–72 years old. In the current article, we summarize participation and data available from this 2014 collection, describe our method for assigning zygosity using survey responses and yearbook photographs, illustrate the GIFTS model applied to 1960 vocabulary scores from more than 80,000 adolescent twins, siblings and schoolmates and summarize the next wave of PTTS data collection being conducted as part of the larger Project Talent Aging Study.


2020 ◽  
Vol 2020 (4) ◽  
Author(s):  
E Coonen ◽  
A van Montfoort ◽  
F Carvalho ◽  
G Kokkali ◽  
C Moutou ◽  
...  

Abstract STUDY QUESTION What are the trends and developments in preimplantation genetic testing (PGT) in 2013–2015 as compared to previous years? SUMMARY ANSWER The main trends observed in the retrospective data collections 2013–2015, representing valuable data on PGT activity in (mainly) Europe, are the increased application of trophectoderm biopsy at the cost of cleavage stage biopsy and the continuing expansion of comprehensive testing technology in PGT for chromosomal structural rearrangements and for aneuploidies (PGT-SR and PGT-A). WHAT IS KNOWN ALREADY Since it was established in 1997, the ESHRE PGT Consortium has been collecting data from international PGT centres. To date, 15 data sets and an overview of the first 10 years of data collections have been published. STUDY DESIGN, SIZE, DURATION Collection of (mainly) European data by the PGT Consortium for ESHRE. The data for PGT cycles performed between 1 January 2013 and 31 December 2015 were provided by participating centres on a voluntary basis. For the collection of cycle, pregnancy and baby data, separate, pre-designed MS Excel tables were used. PARTICIPANTS/MATERIALS, SETTING, METHODS Data were submitted by 59, 60 and 59 centres respectively for 2013, 2014 and 2015 (full PGT Consortium members). Records with incomplete or inconsistent data were excluded from the calculations. Corrections, calculations, figures and tables were made by expert co-authors. MAIN RESULTS AND THE ROLE OF CHANCE For data collection XVI/XVII/XVIII, 59/60/59 centres reported data on 8164/9769/11 120 cycles with oocyte retrieval: 5020/6278/7155 cycles for PGT-A, 2026/2243/2661 cycles for PGT for monogenic/single gene defects, 1039/1189/1231 cycles for PGT-SR and 79/59/73 cycles for sexing for X-linked diseases. From 2013 until 2015, the uptake of biopsy at the blastocyst stage was mainly observed in cycles for PGT-A (from 23% to 36%) and PGT-SR (from 22% to 36%), alongside the increased application of comprehensive testing technology (from 66% to 75% in PGT-A and from 36% to 58% in PGT-SR). LIMITATIONS, REASONS FOR CAUTION The findings apply to the 59/60/59 participating centres and may not represent worldwide trends in PGT. Data were collected retrospectively and no details of the follow-up on PGT pregnancies and babies born were provided. WIDER IMPLICATIONS OF THE FINDINGS Being the largest data collection on PGT worldwide, detailed information about ongoing developments in the field is provided. STUDY FUNDING/COMPETING INTEREST(S) The study has no external funding and all costs are covered by ESHRE. There are no competing interests declared. TRIAL REGISTRATION NUMBER N/A.


2021 ◽  
Author(s):  
Julia Duras ◽  
Florian Ziemen ◽  
Daniel Klocke

<p>The DYAMOND project (<strong>DY</strong>namics of the <strong>A</strong>tmospheric general circulation <strong>M</strong>odeled <strong>O</strong>n <strong>N</strong>on-hydrostatic <strong>D</strong>omains) is the first initiative for a model intercomparison of global storm resolving (km-scale) climate simulations. The analysis of these simulations advances the understanding of the climate system and improves the next-generation of weather and climate models. In a first phase, a period of 40 days from 1st of August 2016 was simulated, with all models starting from the same initial conditions. The resulting data set is referred to as ”DYAMOND Summer” data. In its second, currently ongoing phase ”DYAMOND Winter”, participating models simulate 40 days starting on the 20th of January 2020, also covering the period of the EUREC4A field experiment. While the DYAMOND Summer only included atmosphere models, the DYAMOND Winter data set also includes coupled atmosphere-ocean models resolving ocean-eddies, atmospheric storms and their interactions. <br>The analysis of these simulations allows to identify robust features common to this class of new models, and provides insights into implementation-dependence of the results and a hint of the future of climate modelling (e.g. <em>Arnold et al., 2020 </em>; <em>Dueben et al., 2020 </em>; <em>Stevens et al., 2020 </em>; <em>Wedi et al., 2020 </em>). <br>The Centre of Excellence in Simulation of Weather and Climate in Europe (ESiWACE) and the German Climate computing centre (DKRZ) are making this data available to the research community. For this purpose, a user-friendly central point of access, the so-called “DYAMOND data library” has been developed. It provides access to the Summer and Winter data collections. A growing community with a lively exchange (e.g. during regular Hackathons) further simplifies the usage of these data sets. </p><p>The presentation will introduce the DYAMOND project with a focus on the new DYAMOND Winter data collection. It will present the corresponding experiment protocol and the participating models. To invite scientists to use these data sets, different ways of using the data on the supercomputer of DKRZ will be described in detail.</p>


2013 ◽  
Vol 16 (1) ◽  
pp. 157-162 ◽  
Author(s):  
Jaakko Kaprio

In 2002 and 2006, review papers have described the Finnish Twin Cohort and studies conducted on these population-based, longitudinal data sets with extensive follow-up data. Three cohorts have been established: the older twin cohort in the 1970s, and the Finntwin12 and Finntwin16 studies initiated in the 1990s. The present review provides on update on the latest data collections conducted since the previous review. These cover the fourth waves of data collection in the older cohort (twins born before 1958) and Finntwin12 (twins born 1983–1987). The fifth wave of data collection in Finntwin16 (twins born 1975–1979) also included assessments of their spouses/partners. An analysis of mortality in the older cohort from 1975 to 2009 indicates that the mortality of adult twins (as individuals) does not differ from the population at large. Based on the cohorts, many sub-studies with more detailed phenotyping and collection of omics data have been conducted or are in progress. We also contribute to numerous national and international collaborations.


BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e031705 ◽  
Author(s):  
Lisa Hurt ◽  
Pauline Ashfield-Watt ◽  
Julia Townson ◽  
Luke Heslop ◽  
Lauren Copeland ◽  
...  

PurposeRecruitment and follow-up in epidemiological studies are time-consuming and expensive. Combining online data collection with a register of individuals who agree to be contacted about research opportunities provides an efficient, cost-effective platform for population-based research. HealthWise Wales (HWW) aims to facilitate research by recruiting a cohort of individuals who have consented to be informed about research projects, advertising studies to participants, supporting data collection on specific topics and providing access to linked healthcare data for secondary analyses. In this paper, we describe the design of the project, ongoing data collection, methods of data linkage to routine healthcare records, baseline characteristics of participants, the strengths and limitations of the register, and the ways in which the project can support researchers.ParticipantsAdults (aged 16 years and above) living or receiving their healthcare in Wales are eligible for inclusion. Participants consent to be contacted for follow-up data collection and for their details to be used to access their routinely collected National Health Service records for research purposes. Data are collected using a web-based application, with new questionnaires added every 6 months. Data collection on sociodemographic and lifestyle factors is repeated at intervals of 2–3 years. Recruitment is ongoing, with 21 779 participants alive and currently registered.Findings to date99% of participants have complete information on age and sex, and 64% have completed questionnaires on sociodemographic and lifestyle factors. These data can be linked with national health databases within the Secure Anonymised Information Linkage (SAIL) databank, with 93% of participants matching a record in SAIL. HWW has facilitated the recruitment of 43 826 participants to 15 different studies.Future plansThe medium-term goal for the project is to enrol at least 50 000 adults. Recruitment strategies are being devised to achieve a study sample that closely models the population of Wales. Potential biosampling methods are also currently being explored.


2019 ◽  
Vol 13 (Supl 1) ◽  
pp. 114S
Author(s):  
André Vitor Kerber Cavalcanti Lemos ◽  
Moises Cohen ◽  
Nacime Salomão Barbachan Mansur

Introduction: Clinical data collection is an essential stage in the development of any scientific research study. The recruitment of patients to research centers for data collection may be considerably difficult in some situations. There are few studies examining the use of distance evaluations conducted with digital and online tools. The use of information technology and the Internet to collect clinical data for scientific studies in orthopedics in Brazil remains somewhat limited; nonetheless, such approaches may provide several benefits to and facilitate data collection for Brazilian researchers. Methods: We performed a descriptive, observational study with printed or online (using an electronic device, such as computer, tablet or cell phone) self-administered questionnaires. Data from 40 patients (22 women; 18 men) with a mean age of 36.9 years (min: 15 years; max: 65 years) who were undergoing orthopedic follow-up for acute ankle sprain were collected using the Foot Function Index (FFI), Physical Function, Cumberland Ankle Instability Tool (CAIT), and visual analog scale (VAS) questionnaires. The questionnaires were administered at 4 different times: at the initial evaluation and at 3 weeks, 6 weeks and 12 weeks. Results: A comparative group analysis (digital, online data collection vs physical data collection) showed a higher level of collection of all data for each patient when the online questionnaires were used (87.5% vs 45% p<0.005), along with a higher accuracy of data collection (standard deviation (SD): 1.26; 2.3318; 1.6393 vs SD: 2.948; 3.807; 8.1189 p<0.005). Conclusion: Data collection using a remote approach through digital online forms (Internet) was highly effective in increasing the rate of response to long-term orthopedic follow-up questionnaires and showed improved data quality (decreased variability in collection dates), thus rendering online data more reliable for intergroup comparison.


2021 ◽  
Author(s):  
◽  
Baris Ata ◽  
Luca Gianaroli ◽  
Kersti Lundin ◽  
Saria Mcheik ◽  
...  

Abstract Study question What is the impact of SARS-CoV-2 infection on the outcome of a pregnancy after medically assisted reproduction? Summary answer Our results suggest that medically assisted reproduction (MAR) pregnancies are not differentially affected by SARS-CoV-2 infection compared to spontaneous pregnancies. What is known already Information on the effects of COVID-19 on pregnancy after MAR is scarce when women get infected during MAR or early pregnancy, even though such information is vital for informing women seeking pregnancy. Study design, size, duration Data from SARS-CoV-2 affected MAR pregnancies were collected between May 2020 and June 2021 through a voluntary data collection, organised by the European Society of Human Reproduction and Embryology (ESHRE). Participants/materials, setting, methods All ESHRE members were invited to participate to an online data collection for SARS-CoV-2-infected MAR pregnancies. Main results and the role of chance The dataset includes 80 cases from 32 countries, including 67 live births, 10 miscarriages, 2 stillbirths and 1 maternal death. An additional 25pregnancies were ongoing at the time of writing. Limitations, reasons for caution An international data registry based on voluntary contribution can be subject to selective reporting with possible risks of over- or under-estimation. Wider implications of the findings The current data can be used to guide clinical decisions in the care of women pregnant after MAR, in the context of the COVID-19 pandemic. Study funding/competing interest(s) The authors acknowledge the support of ESHRE for the data registry and meetings. JT reports grants or contracts from Sigrid Juselius Foundation, EU and Helsinki University Hospital Funds, outside the scope of the current work. The other authors declare that they have no conflict of interest.


2018 ◽  
Vol 1 ◽  
pp. 107
Author(s):  
Adi Heryadi ◽  
Evianawati Evianawati

This study aims to prove whether transformational leadership training is effective for building anti-corruption attitudes of villages in Kebonharjo village, subdistrict Samigaluh Kulonprogo. This research is an experimental research with one group pre and posttest design.Subject design is 17 people from village of 21 candidates registered. Measuring tool used in this research is the scale of anti-corruption perception made by the researcher referring to the 9 anti-corruption values with the value of reliability coefficient of 0.871. The module used as an intervention made by the researcher refers to the transformational leadership dimension (Bass, 1990). The data collected is analyzed by statistical analysis of different test Paired Sample Test. Initial data collection results obtained sign value of 0.770 which means> 0.05 or no significant difference between anti-corruption perception score between before and after training. After a period of less than 1 (one) month then conducted again the measurement of follow-up of the study subjects in the measurement again using the scale of anti-corruption perception. The results of the second data collection were analysed with Paired Samples Test and obtained the value of 0.623 sign meaning p> 0.05 or no significant difference between post test data with follow-up data so that the hypothesis of this study was rejected.


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