Emerging new practices in technology to support independent community access for people with intellectual and cognitive disabilities

This is the published version, also available here: http://dx.doi.org/10.3233/NRE-2011-0654.The concept of community access is a multidimensional term, which may involve issues related to physical access, knowledge and information, power and control, relationships and communications, advocacy, participation and quality of life [21]. This paper discusses historical and emerging practices and interventions related to physical access to community and community based information for individuals with cognitive disabilities such as intellectual disability, autism or traumatic brain injury. While much societal attention has been paid to features of independent community access for populations such as individuals with hearing, vision or physical disabilities, less attention has focused on independent community access for people with intellectual and other significant cognitive disabilities. Attitudes and actions by families and professional service communities are often mixed for some individuals in this population. The somewhat limited research base in these areas is explored, including a case study review and results from several promising feasibility studies. The paper concludes with comments concerning future prospects and recommendations for improving independent community access for persons with significant cognitiv

Self-directed career preference selection for individuals with intellectual disabilities: Using computer technology to enhance self-determination

This is the published version. Copyright 2003 IOS Press.Objectives: To conduct a preliminary study investigating the application of a self-directed video and audio software program to assist individuals with intellectual disabilities to express their vocational job preferences. A working software prototype, called WorkSight, was developed and field tested. Study design: The effectiveness of theWorkSight approach was assessed by comparing it to currently used career assessment tools via ratings by educators and agency professionals. WorkSight was also tested in terms of its efficacy to match the job preferences that were predicted by the same educators and agency professionals. A total of 25 adults with intellectual disabilities participated in this study. Results: Adults with intellectual disabilities were able to use the computer-based job preference assessment to determine career and job priorities. Conclusions: The use of technology providing multimedia-based work information has promise to enable persons with intellectual disabilities to express preferences and to improve job placement and matching activities

Technology use by people with intellectual and developmental disabilities to support employment activities: A single-subject design meta analysis

This is the published version. Copyright 2006 IOS PressObjectives: Technology has the potential to improve employment and rehabilitation related outcomes for persons with disabilities. The purpose of this study was to examine the impact of technology use on employment-related outcomes for people with intellectual and developmental disabilities. Study design: A comprehensive search of the literature pertaining to technology use by people with intellectual disabilities was conducted, and a single-subject design meta analysis was conducted for a subset of those studies, which focused on employment and rehabilitation related outcomes. Results: The use of technology to promote outcomes in this area was shown to be generally effective, in particular when universal design features were addressed. Conclusions: Technology has the potential to enable people with intellectual and developmental disabilities to achieve more positive employment and rehabilitation outcomes. It is important to focus on universal design features important to persons with cognitive disabilities, and there is a need for more research in this area

A Novel Bacterium Associated with Lymphadenitis in a Patient with Chronic Granulomatous Disease

Chronic granulomatous disease (CGD) is a rare inherited disease of the phagocyte NADPH oxidase system causing defective production of toxic oxygen metabolites, impaired bacterial and fungal killing, and recurrent life-threatening infections. We identified a novel gram-negative rod in excised lymph nodes from a patient with CGD. Gram-negative rods grew on charcoal-yeast extract, but conventional tests could not identify it. The best 50 matches of the 16S rRNA (using BLAST) were all members of the family Acetobacteraceae, with the closest match being Gluconobacter sacchari. Patient serum showed specific band recognition in whole lysate immunoblot. We used mouse models of CGD to determine whether this organism was a genuine CGD pathogen. Intraperitoneal injection of gp91(phox) (−/−) (X-linked) and p47 (phox −/−) (autosomal recessive) mice with this bacterium led to larger burdens of organism recovered from knockout compared with wild-type mice. Knockout mouse lymph nodes had histopathology that was similar to that seen in our patient. We recovered organisms with 16S rRNA sequence identical to the patient's original isolate from the infected mice. We identified a novel gram-negative rod from a patient with CGD. To confirm its pathogenicity, we demonstrated specific immune reaction by high titer antibody, showed that it was able to cause similar disease when introduced into CGD, but not wild-type mice, and we recovered the same organism from pathologic lesions in these mice. Therefore, we have fulfilled Koch's postulates for a new pathogen. This is the first reported case of invasive human disease caused by any of the Acetobacteraceae. Polyphasic taxonomic analysis shows this organism to be a new genus and species for which we propose the name Granulobacter bethesdensis

Evaluation of the Arabin cervical pessary for prevention of preterm birth in women with a twin pregnancy and short cervix (STOPPIT-2):An open-label randomised trial and updated meta-analysis

BackgroundPreterm-labour-associated preterm birth is a common cause of perinatal mortality and morbidity in twin pregnancy. We aimed to test the hypothesis that the Arabin pessary would reduce preterm-labour-associated preterm birth by 40% or greater in women with a twin pregnancy and a short cervix.Methods and findingsWe conducted an open-label randomised controlled trial in 57 hospital antenatal clinics in the UK and Europe. From 1 April 2015 to 14 February 2019, 2,228 women with a twin pregnancy underwent cervical length screening between 18 weeks 0 days and 20 weeks 6 days of gestation. In total, 503 women with cervical length ≤ 35 mm were randomly assigned to pessary in addition to standard care (n = 250, mean age 32.4 years, mean cervical length 29 mm, with pessary inserted in 230 women [92.0%]) or standard care alone (n = 253, mean age 32.7 years, mean cervical length 30 mm). The pessary was inserted before 21 completed weeks of gestation and removed at between 35 and 36 weeks or before birth if earlier. The primary obstetric outcome, spontaneous onset of labour and birth before 34 weeks 0 days of gestation, was present in 46/250 (18.4%) in the pessary group compared to 52/253 (20.6%) following standard care alone (adjusted odds ratio [aOR] 0.87 [95% CI 0.55-1.38], p = 0.54). The primary neonatal outcome-a composite of any of stillbirth, neonatal death, periventricular leukomalacia, early respiratory morbidity, intraventricular haemorrhage, necrotising enterocolitis, or proven sepsis, from birth to 28 days after the expected date of delivery-was present in 67/500 infants (13.4%) in the pessary group compared to 76/506 (15.0%) following standard care alone (aOR 0.86 [95% CI 0.54-1.36], p = 0.50). The positive and negative likelihood ratios of a short cervix (≤35 mm) to predict preterm birth before 34 weeks were 2.14 and 0.83, respectively. A meta-analysis of data from existing publications (4 studies, 313 women) and from STOPPIT-2 indicated that a cervical pessary does not reduce preterm birth before 34 weeks in women with a short cervix (risk ratio 0.74 [95% CI 0.50-1.11], p = 0.15). No women died in either arm of the study; 4.4% of babies in the Arabin pessary group and 5.5% of babies in the standard treatment group died in utero or in the neonatal period (p = 0.53). Study limitations include lack of power to exclude a smaller than 40% reduction in preterm labour associated preterm birth, and to be conclusive about subgroup analyses.ConclusionsThese results led us to reject our hypothesis that the Arabin pessary would reduce the risk of the primary outcome by 40%. Smaller treatment effects cannot be ruled out.Trial registrationISRCTN Registry ISRCTN 02235181. ClinicalTrials.gov NCT02235181

Compositional and expression analyses of the glideosome during the Plasmodium life cycle reveal an additional myosin light chain required for maximum motility

Myosin A (MyoA) is a Class XIV myosin implicated in gliding motility and host cell and tissue invasion by malaria parasites. MyoA is part of a membrane-associated protein complex called the glideosome, which is essential for parasite motility and includes the MyoA light chain MTIP, and several glideosome-associated proteins (GAPs). However, most studies of MyoA have focused on single stages of the parasite life cycle. We examined MyoA expression throughout the Plasmodium berghei life cycle in both mammalian and insect hosts. In extracellular ookinetes, sporozoites and merozoites, MyoA was located at the parasite periphery. In the sexual stages, zygote formation and initial ookinete differentiation precede MyoA synthesis and deposition, which occurred only in the developing protuberance. In developing intracellular asexual blood stages, MyoA was synthesized in mature schizonts and was located at the periphery of segmenting merozoites, where it remained throughout maturation, merozoite egress and host cell invasion. Besides the known GAPs in the malaria parasite, the complex included GAP40, an additional myosin light chain designated essential light chain (ELC) and several other candidate components. This ELC bound the MyoA neck region adjacent to the MTIP binding site, and both myosin light chains co-located to the glideosome. Co-expression of MyoA with its two light chains revealed that the presence of both light chains enhances MyoA-dependent actin motility. In conclusion, we have established a system to study the interplay and function of the three glideosome components, enabling the assessment of inhibitors that target this motor complex to block host cell invasion