There is a variability regarding timing of consent and personnel used in patient recruitment for neonatal research. We explored the associations between the study personnel and timing of consent with ...parents' decisional conflict and ultimately their decision to enroll.
This was a multi-site, cross-sectional survey conducted between August 2015 and October 2017. Participants were parents approached to enroll their 24-28-week infant in a clinical trial. Parents completed an interviewer-administered 61-item questionnaire.
Overall, 163 surveys were completed; 105 by parents of enrolled infants and 58 by parents of non-enrolled infants (54.5% participation rate). Neither the individual requesting nor timing of consent was associated with parents' knowledge score, decisional conflict, or decision to enroll. Parents preferred to be approached prenatally and by their infant's doctor.
Study designers and IRBs may allow flexibility in personnel and timing of consent as it is respectful of parents and may enhance trial enrollment.
Thousands of Canadians who need formal home care are not receiving it, a study suggests. Government-funded home-care agencies pay for visits by homemakers, physiotherapists and other health workers ...to assist people in their homes who are recovering from sickness or suffer chronic illness. The study was based on 1994-95 data, when half a million Canadians were receiving formal home care. It's the first time Statistics Canada has had a national survey that included questions on home care.
"You get a chance to comment on wrong records, you don't actually get a chance to correct them," said Ruth Carey, executive director of the HIV/AIDS Legal Clinic of Ontario. Carey said the way the ...draft legislation sits now, keepers of health records can disclose written or verbal information without a person's consent. Halyna Perun agreed the draft needs to be tightened up before it is introduced as legislation.
Unfortunately, depression was looked upon for years as a female personality problem rather than the serious illness it is, says Dr. Barbara Dorian, chief of psychiatry at Toronto's Women's College ...Hospital. Dorian told a women's health conference Saturday that at least one in five women suffer from depression, often in recurring episodes that characterize a chronic illness. One participant asked Dorian whether depression seemed to be more prevalent in women simply because many men won't admit to suffering depression.
Junior Achievement, founded in 1919 in Massachusetts, has about 10,000 students involved in various programs in Metro alone. In the high school program, students form their own small business, elect ...officers, select and develop a product to market, maintain financial records and pay dividends. After 26 weeks in operation, the company is liquidated, bills and taxes are paid and profits are distributed to the shareholders.
IMPORTANCE: The clinical management of BRCA1 and BRCA2 mutation carriers requires accurate, prospective cancer risk estimates. OBJECTIVES: To estimate age-specific risks of breast, ovarian, and ...contralateral breast cancer for mutation carriers and to evaluate risk modification by family cancer history and mutation location. DESIGN, SETTING, AND PARTICIPANTS: Prospective cohort study of 6036 BRCA1 and 3820 BRCA2 female carriers (5046 unaffected and 4810 with breast or ovarian cancer or both at baseline) recruited in 1997-2011 through the International BRCA1/2 Carrier Cohort Study, the Breast Cancer Family Registry and the Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer, with ascertainment through family clinics (94%) and population-based studies (6%). The majority were from large national studies in the United Kingdom (EMBRACE), the Netherlands (HEBON), and France (GENEPSO). Follow-up ended December 2013; median follow-up was 5 years. EXPOSURES: BRCA1/2 mutations, family cancer history, and mutation location. MAIN OUTCOMES AND MEASURES: Annual incidences, standardized incidence ratios, and cumulative risks of breast, ovarian, and contralateral breast cancer. RESULTS: Among 3886 women (median age, 38 years; interquartile range IQR, 30-46 years) eligible for the breast cancer analysis, 5066 women (median age, 38 years; IQR, 31-47 years) eligible for the ovarian cancer analysis, and 2213 women (median age, 47 years; IQR, 40-55 years) eligible for the contralateral breast cancer analysis, 426 were diagnosed with breast cancer, 109 with ovarian cancer, and 245 with contralateral breast cancer during follow-up. The cumulative breast cancer risk to age 80 years was 72% (95% CI, 65%-79%) for BRCA1 and 69% (95% CI, 61%-77%) for BRCA2 carriers. Breast cancer incidences increased rapidly in early adulthood until ages 30 to 40 years for BRCA1 and until ages 40 to 50 years for BRCA2 carriers, then remained at a similar, constant incidence (20-30 per 1000 person-years) until age 80 years. The cumulative ovarian cancer risk to age 80 years was 44% (95% CI, 36%-53%) for BRCA1 and 17% (95% CI, 11%-25%) for BRCA2 carriers. For contralateral breast cancer, the cumulative risk 20 years after breast cancer diagnosis was 40% (95% CI, 35%-45%) for BRCA1 and 26% (95% CI, 20%-33%) for BRCA2 carriers (hazard ratio HR for comparing BRCA2 vs BRCA1, 0.62; 95% CI, 0.47-0.82; P=.001 for difference). Breast cancer risk increased with increasing number of first- and second-degree relatives diagnosed as having breast cancer for both BRCA1 (HR for ≥2 vs 0 affected relatives, 1.99; 95% CI, 1.41-2.82; P<.001 for trend) and BRCA2 carriers (HR, 1.91; 95% CI, 1.08-3.37; P=.02 for trend). Breast cancer risk was higher if mutations were located outside vs within the regions bounded by positions c.2282-c.4071 in BRCA1 (HR, 1.46; 95% CI, 1.11-1.93; P=.007) and c.2831-c.6401 in BRCA2 (HR, 1.93; 95% CI, 1.36-2.74; P<.001). CONCLUSIONS AND RELEVANCE: These findings provide estimates of cancer risk based on BRCA1 and BRCA2 mutation carrier status using prospective data collection and demonstrate the potential importance of family history and mutation location in risk assessment.
This article provides a duoethnographic reflection of the authors’ experiences as Asian American women who work in the field of criminology and criminal justice. As two faculty members who actively ...and loudly contradict notions of quiet, submissive Asian women (or, more specifically, shout “Fuck you!” at these racist tropes), we recognize that while our mere existence in academia disrupts the model minority myth, we have also benefitted from the myth and our proximity to whiteness As such, we aim to describe the ways in which we have navigated our own identities in interactions with those at the predominantly white institutions where we are/have been employed. Specifically, we share our experiences and negative repercussions related to student mentorship, institutional and organizational biases, and social justice work. We conclude with a discussion of recommendations and advice for faculty and students, accomplices, and administrators based on our shared vision of diversity, equity, and inclusion.
Analysis of de novo CNVs (dnCNVs) from the full Simons Simplex Collection (SSC) (N = 2,591 families) replicates prior findings of strong association with autism spectrum disorders (ASDs) and confirms ...six risk loci (1q21.1, 3q29, 7q11.23, 16p11.2, 15q11.2-13, and 22q11.2). The addition of published CNV data from the Autism Genome Project (AGP) and exome sequencing data from the SSC and the Autism Sequencing Consortium (ASC) shows that genes within small de novo deletions, but not within large dnCNVs, significantly overlap the high-effect risk genes identified by sequencing. Alternatively, large dnCNVs are found likely to contain multiple modest-effect risk genes. Overall, we find strong evidence that de novo mutations are associated with ASD apart from the risk for intellectual disability. Extending the transmission and de novo association test (TADA) to include small de novo deletions reveals 71 ASD risk loci, including 6 CNV regions (noted above) and 65 risk genes (FDR ≤ 0.1).
•De novo copy number variants (dnCNV) are associated with Autism Spectrum Disorder/ASD•De novo mutations are associated with ASD in individuals with a high IQ•Small de novo deletions, but not large dnCNVs, contain one high-effect ASD risk gene•Identifies 6 ASD loci and 65 ASD genes, many of which target chromatin or the synapse
Through analysis of de novo mutations in autism spectrum disorder (ASD), Sanders et al. find that small deletions, but not large deletions/duplications, contain one critical gene. Combining CNV and sequencing data, they identify 6 loci and 65 genes associated with ASD.
Background
Gastroesophageal reflux disease (GERD) is one of the most common diseases in North America and globally. The aim of this guideline is to provide evidence-based recommendations regarding ...the most utilized and available endoscopic and surgical treatments for GERD.
Methods
Systematic literature reviews were conducted for 4 key questions regarding the surgical and endoscopic treatments for GERD in adults: preoperative evaluation, endoscopic vs surgical or medical treatment, complete vs partial fundoplication, and treatment for obesity (body mass index BMI ≥ 35 kg/m
2
) and concomitant GERD. Evidence-based recommendations were formulated using the GRADE methodology by subject experts. Recommendations for future research were also proposed.
Results
The consensus provided 13 recommendations. Through the development of these evidence-based recommendations, an algorithm was proposed for aid in the treatment of GERD. Patients with typical symptoms should undergo upper endoscopy, manometry, and pH-testing; additional testing may be required for patients with atypical or extra-esophageal symptoms. Patients with normal or abnormal findings on manometry should consider undergoing partial fundoplication. Magnetic sphincter augmentation or fundoplication are appropriate surgical procedures for adults with GERD. For patients who wish to avoid surgery, the Stretta procedure and transoral incisionless fundoplication (TIF 2.0) were found to have better outcomes than proton pump inhibitors alone. Patients with concomitant obesity were recommended to undergo either gastric bypass or fundoplication, although patients with severe comorbid disease or BMI > 50 should undergo Roux-en-Y gastric bypass for the additional benefits that follow weight loss.
Conclusion
Using the recommendations an algorithm was developed by this panel, so that physicians may better counsel their patients with GERD. There are certain patient factors that have been excluded from included studies/trials, and so these recommendations should not replace surgeon–patient decision making. Engaging in the identified research areas may improve future care for GERD patients.
Tobacco smoking and alcohol consumption have been intensively studied in the general population to assess their effects on the risk of breast cancer, but very few studies have examined these effects ...in
and
mutation carriers. Given the high breast cancer risk for mutation carriers and the importance of
and
in DNA repair, better evidence on the associations of these lifestyle factors with breast cancer risk is essential.
Using a large international pooled cohort of
and
mutation carriers, we conducted retrospective (5,707
mutation carriers and 3,525
mutation carriers) and prospective (2,276
mutation carriers and 1,610
mutation carriers) analyses of alcohol and tobacco consumption using Cox proportional hazards models.
For both
and
mutation carriers, none of the smoking-related variables was associated with breast cancer risk, except smoking for more than 5 years before a first full-term pregnancy (FFTP) when compared with parous women who never smoked. For
mutation carriers, the HR from retrospective analysis (HR
) was 1.19 95% confidence interval (CI), 1.02-1.39 and the HR from prospective analysis (HR
) was 1.36 (95% CI, 0.99-1.87). For
mutation carriers, smoking for more than 5 years before an FFTP showed an association of a similar magnitude, but the confidence limits were wider (HR
= 1.25; 95% CI, 1.01-1.55 and HR
= 1.30; 95% CI, 0.83-2.01). For both carrier groups, alcohol consumption was not associated with breast cancer risk.
The finding that smoking during the prereproductive years increases breast cancer risk for mutation carriers warrants further investigation.
This is the largest prospective study of
mutation carriers to assess these important risk factors.
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