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People with intellectual and developmental disabilities must often advocate for themselves in many facets of life, including sexuality. Because of this, sexual self-advocacy is an important concept to develop and apply to policy and practice. This paper provides a conceptualization of sexual self-advocacy, a view of sexuality formulated by adults with intellectual and developmental disabilities that is closely tied to the values of the Self-Advocacy Movement. In describing the study process, this paper also puts forth the Participatory Action Research method, Nominal Group Technique, as an accessible method for gaining insight from adults with intellectual and developmental disabilities. The choice of Nominal Group Technique as a research method was motivated by several factors. Nominal Group Technique served to counterbalance many of the potential research difficulties when working with people with intellectual and developmental disabilities, including the need for understandable, inclusive, and participatory ways to access data from people with intellectual and developmental disabilities, and addressed the topic of sexual self-advocacy that is important to people with intellectual and developmental disabilities.

Drug use may be contributing to the spread of MRSA in a rural southeastern US community., Methicillin-resistant Staphylococcus aureus (MRSA) infections and methamphetamine use are emerging public health problems. We conducted a case–control investigation to determine risk factors for MRSA skin and soft tissue infections (SSTIs) in residents of a largely rural southeastern community in the United States. Case-patients were persons >12 years old who had culturable SSTIs; controls had no SSTIs. Of 119 SSTIs identified, 81 (68.1%) were caused by MRSA. Methamphetamine use was reported in 9.9% of case-patients and 1.8% of controls. After we adjusted for age, sex, and race, patients with MRSA SSTIs were more likely than controls to have recently used methamphetamine (odds ratio 5.10, 95% confidence interval 1.55–16.79). MRSA caused most SSTIs in this population. Transmission of MRSA may be occurring among methamphetamine users in this community.

Two studies were conducted that go beyond previous research by examining when and why children might show intergroup bias in the attribution of positive, but not negative traits (PNAE: the positive–negative asymmetry effect, Mummendey & Otten, 1998, European review of social psychology, Vol. 9). In Study 1 (n = 107) children completed a ‘mixed’ trait attribution task in a dichotomous group context. As predicted there was a developmental trend between 7 and 12 years of age in the PNAE. The 7-year olds were the only age group not to show the effect. Study 1 also found a quadratic developmental trend in children's national intergroup bias. Study 2 (n = 62) replicated the developmental path of the PNAE found in Study 1 using a wider age range of 6–16 years. This study used a ‘mixed’ list of traits which were not only antonyms and a procedure that made the positive and negative trait dimensions explicitly independent. Significantly, Study 2 found in-group exclusion norm partially mediated the development of the PNAE. These findings support an account of the positive–negative asymmetry effect based upon normative processes.

Objective To compare the abbreviated Cutaneous Assessment Tool (CAT), Disease Activity Score (DAS), and Myositis Intention to Treat Activity Index (MITAX) and correlate them with the physician's 10‐cm skin visual analog scale (VAS) in order to define which tool best assesses skin disease in patients with juvenile dermatomyositis. Methods A total of 71 patients recruited to the UK Juvenile Dermatomyositis Cohort and Biomarker Study were included and assessed for skin disease using the CAT, DAS, MITAX, and skin VAS. The Childhood Myositis Assessment Scale (CMAS), manual muscle testing of 8 groups (MMT8), muscle enzymes, inflammatory markers, and physician's global VAS were recorded. Relationships were evaluated using Spearman's correlations and predictors with linear regression. Interrater reliability was assessed using intraclass correlation coefficients. Results All 3 tools showed correlation with the physician's global VAS and skin VAS, with DAS skin showing the strongest correlation with skin VAS. DAS skin and CAT activity were inversely correlated with CMAS and MMT8, but these correlations were moderate. No correlations were found between the skin tools and inflammatory markers or muscle enzymes. DAS skin and CAT were the quickest to complete (mean ± SD 0.68 ± 0.1 minutes and 0.63 ± 0.1 minutes, respectively). Conclusion The 3 skin tools were quick and easy to use. The DAS skin correlated best with the skin VAS. The addition of CAT in a bivariate model containing the physician's global VAS was a statistically significant estimator of skin VAS score. We propose that there is scope for a new skin tool to be devised and tested, which takes into account the strengths of the 3 existing tools.

Juvenile Dermatomyositis (JDM) is a rare serious disease (affecting 2-3 million children/year) presenting with rash and proximal muscle weakness. Serious complications can include calcinosis, GI ulceration, interstitial lung disease (ILD) and even death. It is becoming clear that JDM is a heterogeneous condition. Dividing JDM into sub-phenotypes would allow better prediction of disease severity and more targeted treatments. We have identified novel auto-antibodies in subtypes of JDM that may correlate with specific phenotypes.

Results 682 data entries (DE) from 321 patients were identified as clinically inactive. 255 (37.4%) of these DE (119 patients) met all 4 criteria. 21.2% of DE had skin rash and 10.5% had nailfold changes (Table 1) at the time of assessment. 427 of the total DE (202 patients) met 3 of the 4 criteria. Of these, 320 (74.9%) had clinically inactive based on the 3 muscle criteria (PGA was not met). 61.6% of this group had ongoing skin rash present. Among the 107 remaining DE, which were clinically inactive by 3 criteria of which one was PGA, the frequency of skin changes was lower. The differences between the 3 groups were statistically significant in terms of rash (c2 111.5, p

Juvenile dermatomyositis (JDM) is a childhood autoimmune disease characterised by proximal muscle weakness and cutaneous manifestations. Previous studies have identified an increase in circulating B cells in JDM patients, but their provenance and functional characteristics have not been examined. In this study we investigated whether an immature B cell subset (CD24hiCD38hi), known to be enriched for interleukin (IL)-10 producing regulatory B cells (Breg)1, accounted for the expansion of circulating B cells seen in JDM. The aryl hydrocarbon receptor (AhR) is a ligand based transcription factor, which induces IL-10 expression in T cells2. We investigated the effects of modulating the AhR pathway on IL-10 expression in B cells.

The International Juvenile Dermatomyositis (JDM) Biopsy Consensus Group has previously published and validated a scoring tool for assessment of the severity of pathological change in biopsy specimens from patients with suspected or proven JDM. This tool assesses histological features characteristic of JDM, organised into four domains (inflammatory, vascular, muscle fibre and connective tissue). The score tool includes the assessment of CD3+ and CD68+ inflammatory cells. Given that JDM is a disease characterised by production of autoantibodies and some patients respond to anti-B cell therapy we hypothesise that B cells play an important role in the pathogenesis of the disease.

Objective. Calcinosis is a major cause of morbidity in JDM and has previously been linked to anti-NXP2 autoantibodies, younger age at disease onset and more persistent disease activity. This study aimed to investigate the clinical associations of anti-NXP2 autoantibodies in patients with JDM stratified by age at disease onset. Methods. A total of 285 patients with samples and clinical data were recruited via the UK Juvenile Dermatomyositis Cohort and Biomarker Study. The presence of anti-NXP2 was determined by both immunoprecipitation and ELISA. Logistic regression analysis was performed to assess the age-dependent relationship between anti-NXP2 and the development of calcinosis and disease activity measures. Results. We identified anti-NXP2 autoantibodies in 56 patients (20%). While in all patients younger age at disease onset was associated with an increased risk of calcinosis and this relationship was nearly linear, anti-NXP2 autoantibodies substantially increased the risk of calcinosis across all ages (P = 0.025) and were detectable prior to calcinosis development. Children with anti-NXP2 autoantibodies had a greater degree of weakness (median lowest ever Childhood Myositis Assessment Score 29.6 vs 42) and were less likely to be in remission at 2 years post-diagnosis. No difference in disease activity was seen 4 years post-diagnosis. Conclusion. Children diagnosed at a young age have a high risk of calcinosis regardless of autoantibody status. However, the presence of anti-NXP2 autoantibodies substantially increases the risk of calcinosis across all ages and is associated with disease severity.

Background Juvenile dermatomyositis (JDM) is a rare but severe autoimmune inflammatory myositis of childhood. International collaboration is essential in order to undertake clinical trials, understand the disease and improve long-term outcome. The aim of this study was to propose from existing collaborative initiatives a preliminary minimal dataset for JDM. This will form the basis of the future development of an international consensus-approved minimum core dataset to be used both in clinical care and inform research, allowing integration of data between centres. Methods A working group of internationally-representative JDM experts was formed to develop a provisional minimal dataset. Clinical and laboratory variables contained within current national and international collaborative databases of patients with idiopathic inflammatory myopathies were scrutinised. Judgements were informed by published literature and a more detailed analysis of the Juvenile Dermatomyositis Cohort Biomarker Study and Repository, UK and Ireland. Results A provisional minimal JDM dataset has been produced, with an associated glossary of definitions. The provisional minimal dataset will request information at time of patient diagnosis and during on-going prospective follow up. At time of patient diagnosis, information will be requested on patient demographics, diagnostic criteria and treatments given prior to diagnosis. During on-going prospective follow-up, variables will include the presence of active muscle or skin disease, major organ involvement or constitutional symptoms, investigations, treatment, physician global assessments and patient reported outcome measures. Conclusions An internationally agreed minimal dataset has the potential to significantly enhance collaboration, allow effective communication between groups, provide a minimal standard of care and enable analysis of the largest possible number of JDM patients to provide a greater understanding of this disease. This preliminary dataset can now be developed into a consensus-approved minimum core dataset and tested in a wider setting with the aim of achieving international agreement.

Juvenile dermatomyositis (JDM) is an autoimmune disease characterized by proximal muscle weakness and cutaneous manifestations, typically heliotrope rash and Gottron's papules. Previous studies have identified an increase in circulating B cells in JDM patients, but their provenance and functional characteristics have not been examined. In this study we investigated whether a recently identified immature B cell subset (CD24hiCD38hi) with known regulatory function (Breg) was enriched in JDM and correlated with disease outcome measures.

Aim: Consumer-directed long-term care services have grown dramatically over the past decade, both in the US and internationally. Flexibility in hiring, including the ability to hire family and friends, is a key determinant of interest in consumer direction. This study examined the differential experiences and outcomes for people with intellectual and developmental disabilities (ID/DD) and their families receiving consumer-directed services based on the type of personal support worker (PSW) hired (family, friends, agency staff, non-agency staff). Method: The data includes responses from written surveys sent to families in the Illinois Adult Home Based Support Services Program (a Medicaid waiver program) along with interviews conducted with adults with ID/DD in the program. The measures filled out by 446 families using the Family Satisfaction with Consumer Directed Supports survey (and consumer interview) were used for analysis of satisfaction with the PSW, self-efficacy in hiring and managing the PSW, and the self-determination and community participation of the adults with ID/DD. BRIDGING KNOWLEDGE, RESEARCH AND POLICY: The Growing Older With a Disability (GOWD) Conference, Toronto, Canada, June 5-8, 2011 International Journal of Integrated Care – Volume 12, 16 November – URN:NBN:NL:UI:10-1-113862 – http://www.ijic.org/ Results: PSWs were most likely to be family members followed by agency staff, friends, and nonagency staff. There were no significant differences between groups on demographics of the person with ID/DD or of the primary caregiver, with the exception of caregiver gender and household income. Families who had lower income were less likely to hire agency staff. Ancova analyses controlling for these two factors indicated significant differences between different types of PSWs regarding the family caregiver’s satisfaction with their PSW and their self-efficacy in hiring and managing their PSWs. Participants who hired a family member reported higher levels of satisfaction, followed by friends and staff. However, family caregivers felt the highest amount of self-efficacy when they hired non-agency staff followed by friends, family, and agency staff. There were no significant differences in the self-determination and community participation of the adult with disabilities. Conclusions: These findings suggest that families within a consumer directed program are most satisfied when they hire family and friends as PSWs. However, when they hire non-agency staff they feel better able to manage the PSWs. Also, the extent to which families hire other family members as PSWs is influenced in part by economic considerations. Furthermore, there is little evidence that hiring family members restricts the self-determination and community participation of adults with ID/DD.

DAS skin r ¼ 0.795 r ¼ 0.443 r ¼ 0.424 r ¼ 0.176 r ¼ 0.280 r ¼ 0.311 P < 0.001 P < 0.001 P < 0.001 P < 0.212 P < 0.039 P < 0.022 r ¼ 0.594 r ¼ 0.404 r ¼ 0.453 r ¼ 0.177 r ¼ 0.208 r ¼ 0.281 P < 0.001 P < 0.001 P < 0.001 P < 0.210 P < 0.127 P < 0.040 r ¼ 0.623 r ¼ 0.471 r ¼ 0.428 r ¼ 0.157 r ¼ 0.300 r ¼ 0.164 P < 0.001 P < 0.001 P < 0.001 P < 0.267 P < 0.026 P < 0.235

Various valuation formulae do not explain the valuation of many licensing deals, indicating that persuasive negotiators play an influential role.

Juvenile Dermatomyositis (JDM) is a rare life threatening disease affecting children. Symptoms include severe proximal muscle weakness and characteristic skin rashes. Vascular pathology is often a key finding in JDM including typical features of capillary drop out and abnormal blood vessel endothelial cells. We have observed that another common finding in JDM biopsies is the presence of tubuloreticular inclusions (TRI) detected by electron microscopy (EM) in blood vessel endothelial cells in muscle and the overlying skin. These are tubule-like structures within cisternae of endoplasmic reticulum.

Myositis specific autoantibodies (MSA), exclusively found in patients with Idiopathic Inflammatory Myopathies can be detected in approximately 60% of children with JDM. Anti-MDA5 antibodies, a subgroup of MSA, appear to be associated with clinically amyopathic myositis, rapidly progressive interstitial lung disease (RP-ILD) and a poor prognosis in adult East Asian dermatomyositis patients. Small studies in Japanese children with JDM have suggested similar disease phenotype. This contrasts dramatically with findings in predominantly Caucasian US adult populations where anti-MDA5 has been associated with a distinct cutaneous phenotype and no association with RP-ILD has been found.

Evidence suggests that early and aggressive treatment in Juvenile Dermatomyositis (JDM) improves outcome and prevents complications. Cyclophosphamide has been used as a second-line agent in the treatment of severe or refractory JDM. Published data on the effectiveness of cyclophosphamide in JDM are limited to a previous small case series and case reports.

Juvenile dermatomyositis (JDM) is a rare condition affecting 3 children/million/year. Muscle and skin involvement are key features. The muscle symptoms are frequently the main initial focus: formal measures (CMAS and MMT8) exist to routinely and accurately assess this component of the disease. However the involvement of skin, and its assessment, is also a vital aspect. The abbreviated Cutaneous Assessment Tool (CAT) encompassing active skin disease and skin damage, Disease Activity Score (DAS) and Myositis Intention to Treat Activity Index (MITAX), both with skin components, have all been suggested to measure skin disease in JDM; however the optimal tool is unknown.