scholarly journals Establishment of the Avera Twin Register in the Midwest USA

2017 ◽  
Vol 20 (5) ◽  
pp. 414-418 ◽  
Author(s):  
Julie Kittelsrud ◽  
Erik A. Ehli ◽  
Vikki Petersen ◽  
Tammy Jung ◽  
Gonneke Willemsen ◽  
...  

The Avera Twin Register (ATR) aims to study environmental and genetic influences on health and disease using a longitudinal repository of biological specimens, survey data, and health information provided by multiples and their family members. The ATR is located in Sioux Falls, South Dakota, which is a rural and frontier area in the Midwestern United States with a density of four people per square kilometer. The target area of the ATR is South Dakota and the four surrounding states: Minnesota, Iowa, North Dakota, and Nebraska. Enrollment of twins and higher-order multiples of all ages and their family members started on May 18, 2016. A description of the first 13 months of enrollment in this longitudinal register will be provided. The ATR will collect longitudinal data on lifestyle, including diet and activity levels, aging, complex traits, and diseases. Upon registration, all participants are genotyped on the Illumina Global Screening Array (GSA) and twins and higher order multiples receive information on their zygosity. The ATR aims to contribute to large international GWAS consortia and collaborates closely with the Netherlands Twin Register, allowing for the comparison of collected data and analyses of results. In addition, the ATR will address twin-specific questions.

2019 ◽  
Vol 22 (6) ◽  
pp. 686-690
Author(s):  
Julie M. Kittelsrud ◽  
Erik A. Ehli ◽  
Vikki Petersen ◽  
Tammy Jung ◽  
Jeffrey J. Beck ◽  
...  

AbstractThe aim of the Avera Twin Register (ATR) is to establish a prospective longitudinal repository of twins, multiples, siblings and family members’ biological samples to study environmental and genetic influences on health and disease. Also, it is our intention to contribute to international genome-wide association study (GWAS) twin consortia when appropriate sample size is achieved within the ATR. The ATR is young compared with existing registers and continues to collect a longitudinal repository of biological specimens, survey data and health information. Data and biological specimens were originally collected via face-to-face appointments or the postal department and consisted of paper-informed consents and questionnaires. Enrollment of the ATR began on May 18, 2016 and is located in Sioux Falls, South Dakota, a rural and frontier area in the Central United States with a regional population of approximately 880,000. The original target area for the ATR was South Dakota and the four surrounding states: Minnesota, Iowa, North Dakota and Nebraska. The ATR has found a need to expand that area based on twin and multiple siblings who live in various areas surrounding these states. A description of the state of the ATR today and its transition to online data collection and informed consent will be presented. The ATR collects longitudinal data on lifestyle, including diet and activity levels, aging, plus complex traits and diseases. All twins and multiples participating in the ATR are genotyped on the Illumina Global Screening Array and receive zygosity results.


2019 ◽  
Author(s):  
Yaobin Yin ◽  
Jianguang Ji ◽  
Peng Lu ◽  
Wenyao Zhong ◽  
Liying Sun ◽  
...  

BACKGROUND With online health information becoming increasingly popular among patients and their family members, concerns have been raised about the accuracy from the websites. OBJECTIVE We aimed to evaluate the overall quality of the online information about scaphoid fracture obtained from Chinese websites using the local search engines. METHODS We conducted an online search using the keyword “scaphoid fracture” from the top 5 search engines in China, i.e. Baidu, Shenma, Haosou, Sougou and Bing, and gathered the top ranked websites, which included a total of 120 websites. Among them, 81 websites were kept for further analyses by removing duplicated and unrelated one as well as websites requiring payment. These websites were classified into four categories, including forum/social networks, commercials, academics and physician’s personals. Health information evaluation tool DISCERN and Scaphoid Fracture Specific Content Score (SFSCS) were used to assess the quality of the websites. RESULTS Among the 81 Chinese websites that we studied, commercial websites were the most common one accounting more than half of all websites. The mean DISCERN score of the 81 websites was 25.56 and no website had a score A (ranging from 64 to 80).The mean SFSCS score was 10.04 and no website had a score A (range between 24 and 30). In addition, DISCERN and SFSCS scores from academic and physician’s websites were significantly higher than those from the forum/social networks and commercials. CONCLUSIONS The overall quality of health information obtained from Chinese websites about scaphoid fracture was very low, suggesting that patients and their family members should be aware such deficiency and pay special attentions for the medical information obtained by using the current search engines in China.


2020 ◽  
Author(s):  
Christina Cassady ◽  
William Ben Mortenson ◽  
Andrea F Townson ◽  
Shannon Sproule ◽  
Janice Jennifer Eng

BACKGROUND Access to quality health information is essential for self-management after serious injuries such as spinal cord injury (SCI). OBJECTIVE The goal of this study was to evaluate the role of a consumer website in addressing the information needs of persons and families with SCI, as well as its impact on their knowledge and behaviour. METHODS Persons with SCI and family members were recruited from 3 settings: an acute hospital, a rehabilitation hospital, and an SCI community organization to acquire perspectives from early after injury to the chronic stage. Participants were introduced to the Spinal Cord Injury Research Evidence (SCIRE) Community website, which was an internet site developed to provide evidence-informed health information about SCI in everyday language. After using the SCIRE Community website for 4 weeks, semi-structured individual interviews were conducted to explore purposes of use, user experience, and impact on knowledge and behaviour. Interview transcripts were analyzed using qualitative thematic analysis. RESULTS The participants were 24 individuals (18 persons with SCI and 6 family members). Thirteen participants completed the study in a hospital setting and 11 participants in a community setting. We identified 3 main themes in the data: (1) ‘An internet tool to support and empower persons and families’ described the empowering nature of access to an independent information source which enabled persons and families with SCI to take a more active role in their care; (2) ‘an accessible source of credible information’ described how users valued easy to access content with oversight by experts (i.e., perceived to be trustworthy); and (3) ‘Opportunities to increase impact’ outlined suggestions on creating opportunities to engage with content through active learning strategies and community connections. CONCLUSIONS Persons and families with SCI valued having access to an independent online health information website, especially early after injury, as it helped to empower autonomy and facilitated better communication between persons and families and healthcare providers. Our study provides support for the value of internet-based health information as a supplementary tool for therapeutic education for persons and families with serious health conditions such as SCI.


Incarceration ◽  
2020 ◽  
Vol 2 (1) ◽  
pp. 263266632097780
Author(s):  
Alexandra Cox ◽  
Dwayne Betts

There are close to seven million people under correctional supervision in the United States, both in prison and in the community. The US criminal justice system is widely regarded as an inherently unmerciful institution by scholars and policymakers but also by people who have spent time in prison and their family members; it is deeply punitive, racist, expansive and damaging in its reach. In this article, we probe the meanings of mercy for the institution of parole.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kevin Lanza ◽  
Melody Alcazar ◽  
Deanna M. Hoelscher ◽  
Harold W. Kohl

Abstract Background Latinx children in the United States are at high risk for nature-deficit disorder, heat-related illness, and physical inactivity. We developed the Green Schoolyards Project to investigate how green features—trees, gardens, and nature trails—in school parks impact heat index (i.e., air temperature and relative humidity) within parks, and physical activity levels and socioemotional well-being of these children. Herein, we present novel methods for a) observing children’s interaction with green features and b) measuring heat index and children’s behaviors in a natural setting, and a selection of baseline results. Methods During two September weeks (high temperature) and one November week (moderate temperature) in 2019, we examined three joint-use elementary school parks in Central Texas, United States, serving predominantly low-income Latinx families. To develop thermal profiles for each park, we installed 10 air temperature/relative humidity sensors per park, selecting sites based on land cover, land use, and even spatial coverage. We measured green features within a geographic information system. In a cross-sectional study, we used an adapted version of System for Observing Play and Recreation in Communities (SOPARC) to assess children’s physical activity levels and interactions with green features. In a cohort study, we equipped 30 3rd and 30 4th grade students per school during recess with accelerometers and Global Positioning System devices, and surveyed these students regarding their connection to nature. Baseline analyses included inverse distance weighting for thermal profiles and summing observed counts of children interacting with trees. Results In September 2019, average daily heat index ranged 2.0 °F among park sites, and maximum daily heat index ranged from 103.4 °F (air temperature = 33.8 °C; relative humidity = 55.2%) under tree canopy to 114.1 °F (air temperature = 37.9 °C; relative humidity = 45.2%) on an unshaded playground. 10.8% more girls and 25.4% more boys interacted with trees in September than in November. Conclusions We found extreme heat conditions at select sites within parks, and children positioning themselves under trees during periods of high heat index. These methods can be used by public health researchers and practitioners to inform the redesign of greenspaces in the face of climate change and health inequities.


2021 ◽  
pp. 174889582110173
Author(s):  
Douglas Evans ◽  
Adam Trahan ◽  
Kaleigh Laird

The detriment of incarceration experienced by the formerly incarcerated has been increasingly explored in the literature on reentry. A tangential but equally concerning issue that has recently received more research attention is the effect on family members of the incarcerated. The stigma of a criminal conviction is most apparent among families of convicted sex offenders, who experience consequences parallel to those of their convicted relative. Drawing from interviews with 30 individuals with a family member incarcerated for a sex offence in the United States, this study explores manifestations of stigma due to familial association. The findings suggest that families face negative treatment from social networks and criminal justice officials, engage in self-blame and that the media’s control over the narrative exacerbates family members’ experiences. Given the pervasiveness of criminal justice system contact, the rapid growth of the sex offender registry in the United States, and the millions of family members peripherally affected by one or both, justice system reforms are needed to ensure that family members are shielded from the harms of incarceration and registration.


2021 ◽  
Author(s):  
Lianne P. de Vries ◽  
Toos C. E. M. van Beijsterveldt ◽  
Hermine Maes ◽  
Lucía Colodro-Conde ◽  
Meike Bartels

AbstractThe distinction between genetic influences on the covariance (or bivariate heritability) and genetic correlations in bivariate twin models is often not well-understood or only one is reported while the results show distinctive information about the relation between traits. We applied bivariate twin models in a large sample of adolescent twins, to disentangle the association between well-being (WB) and four complex traits (optimism, anxious-depressed symptoms (AD), aggressive behaviour (AGG), and educational achievement (EA)). Optimism and AD showed respectively a strong positive and negative phenotypic correlation with WB, the negative correlation of WB and AGG is lower and the correlation with EA is nearly zero. All four traits showed a large genetic contribution to the covariance with well-being. The genetic correlations of well-being with optimism and AD are strong and smaller for AGG and EA. We used the results of the models to explain what information is retrieved based on the bivariate heritability versus the genetic correlations and the (clinical) implications.


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