Browsing by Subject "Long-term follow-up"

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    Congenital Hypothyroidism Long-Term Follow-up Project: Navigating the Rough Waters of a Multi-Center, Multi-State Public Health Project
    (Springer International Publishing, 2015-06) Wintergerst, Kupper; Gembel, Gina; Kreipe, Tracey; Zeller, Patrick; Eugster, Erica; Young, Bill; Andruszewski, Karen; Kleyn, Mary; Cunningham, Troi; Fawbush, Sandy; Vanderburg, Nancy; Sockalosky, Joe; Menon, Ram; Linard, Sharon; Hoffman, Gary; Gorman, Lisa; Department of Pediatrics, IU School of Medicine
    The Region 4 Midwest Genetics Collaborative, made up of seven regional states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin), brought together pediatric endocrinologists, state laboratory experts, public health follow-up specialists, and parents of children with congenital hypothyroidism (CH) to identify the three-year follow-up management and education patterns of primary care clinicians and pediatric endocrinologists in the care of children diagnosed with CH by state newborn screening (NBS) programs. Among a number of challenges, each state had different NBS methods, data systems, public health laws, and institutional review board (IRB) requirements. Furthermore, the diagnosis of CH was complicated by the timing of the NBS sample, the gestational age, weight, and co-morbidities at delivery. There were 409 children with CH identified through NBS in 2007 in the seven state region. The clinician of record and the parents of these children were invited to participate in a voluntary survey. Approximately 64 % of clinician surveys were collected with responses to questions relating to treatment, monitoring practices, educational resources, genetic counseling, and services provided to children with confirmed CH and their families. Nearly one-quarter (24 %) of parents surveyed responded to questions relating to treatment, education, genetic counseling, resources, and services they received or would like to receive. De-identified data from six of the seven states were compiled for analysis, with one state being unable to obtain IRB approval within the study timeline. The data from this collaborative effort will improve state follow-up programs and aid in developing three-year follow-up guidelines for children diagnosed with CH. To aid in the facilitation of similar public health studies, this manuscript highlights the challenges faced, and focuses on the pathway to a successful multi-state public health endeavor.
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    Does Cognitive Training Reduce Falls across Ten Years?: Data from the ACTIVE Trial
    (MDPI, 2023-03-11) Sprague, Briana N.; Ross, Lesley A.; Ball, Karlene K.; Medicine, School of Medicine
    The purpose of this study was to examine the effect of cognitive training on the risk of experiencing a fall across 10 years. The study used data from the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) randomized controlled trial. Older adults aged 65–94 were randomly assigned to speed of processing, memory, or reasoning training or to a no-contact control group (n = 2802). The experience of a fall in the prior two months was assessed at baseline and at 1, 2, 3, 5, and 10 years posttest. Cox proportional hazards explored group differences in the total sample, as well as group differences for participants classified as low risk (n = 2360) and high risk (n = 442) for future falls. The data were censored at the first reported fall postbaseline. After baseline, 983 (35.08%) participants across the full sample reported a fall. There were no significant effects of the training in the full sample or in the low-risk sample of participants. However, the participants at greater risk for future falls in the speed of processing training group were 31% less likely (HR = 0.69; 95% CI = 0.48, 0.998, p = 0.049) to experience a subsequent fall across ten years compared to the control group. Reasoning and memory training did not reduce a future fall in the high-risk sample. The speed of processing training reduced the risk of future falls across ten years in the high-risk participants. Future work should examine moderators and mediators of training in at-risk samples.