A personalised activity programme helps reduce fatigue in people after Guillain-Barré Syndrome in a replicated single system design.

PURPOSE: We evaluated the effectiveness of an online activity-focussed programme to decrease fatigue in people with prior Guillain-Barré Syndrome and explored the perspectives of participants regarding the acceptability and feasibility of the programme. MATERIALS AND METHODS: We recruited eight people diagnosed with Guillain-Barré Syndrome more than two years previously who still had fatigue limiting daily activity. We used mixed methods with a replicated single system design using repeated outcome measures across the three phases (baseline, intervention, follow-up) to evaluate the impact of the intervention on fatigue, activity, wellbeing and confidence to exercise. We used qualitative interviews to explore participants' perspectives of the programme. RESULTS: All participants developed a personalized plan to manage fatigue using goals and feedback, which was effective in reducing fatigue for most participants. Participants were positive about what they had learnt about fatigue, themselves and strategies to manage fatigue. Some participants also experienced improvements in activity, exercise confidence and health and wellbeing. Not all changes were sustained past the follow-up period, which reflects participants' differing levels of confidence to continue with their plan. CONCLUSION: Graduated physical activity in association with developing a personalised plan were key features effective in managing fatigue after Guillain-Barré Syndrome.

Carefully graded activity can improve fatigue for people with Guillain-Barré Syndrome.Telehealth is a useful medium for delivering a fatigue management programme as it removes the need to travel and improves access for those who live remotely.Collaboratively developing a fatigue management programme that is individualized to a person's context is probable to contribute to their sense of ownership and likelihood to sustain the plan.Although people may have the skills and knowledge to set goals, use feedback and change their plan, many appreciate the accountability they perceive from ongoing sessions for fatigue management.

Lost in the pandemic: COVID-19's impact on health professions educators.

BACKGROUND: Minimal research has explored the pandemic's impact on health professions educators (HPEs). Given that health professions educator academies provide centralised support and professional development to HPEs through communities of practice and promoting education at their institutions, it is important to examine how academies met HPEs' needs during the pandemic. This study investigates the COVID-19 pandemic's effects on HPEs and examines how academies supported HPEs' educational roles during the pandemic. METHODS: Using a mixed-methods approach, the authors surveyed United States educator academy members on changes in HPEs' activities, emphasising clinical and educational tasks and work-life integration. Participants shared their academies' innovations and support responses. Data were analysed using chi-square and content analyses. FINDINGS: Twenty percent of 2784 recipients (n = 559) completed the survey. Most respondents indicated the pandemic caused them to spend more time on clinical and education leadership/administration than before the pandemic. HPEs integrated innovative instructional strategies, yet many shifted away from teaching, mentoring and scholarship. Over half were dissatisfied with work-life integration during the pandemic. Females, especially, reported that professional work was compromised by personal caregiving. Academies increased their range of member services; however, they did not fully meet their members' needs, including providing expanded professional development and advocating on HPE's behalf for increased protected time dedicated to educator responsibilities. DISCUSSION: HPEs faced unprecedented challenges in their personal and professional lives during the COVID-19 pandemic. Neglecting the needs of HPEs amidst global crises poses a substantial threat to the quality of education for upcoming generations of health care professionals.

Effects of live-online, group mindfulness training on opioid use and anxiety during buprenorphine treatment: A comparative effectiveness RCT.

BACKGROUND: Office-based opioid treatment with buprenorphine has emerged as a popular evidence-based treatment for opioid use disorder. Unfortunately, psychosocial stress, anxiety, pain, and co-morbid substance use increase patients' risk for relapse. We designed this study to compare the effects of complementing buprenorphine treatment with 24 weeks of a live-online Mindful Recovery Opioid Care Continuum (M-ROCC) group to a time and attention-matched, live-online Recovery Support Group (RSG) active control condition. METHODS: We plan to enroll a maximum of N = 280 and randomize at least N = 192 patients prescribed buprenorphine through referrals from office-based and telemedicine buprenorphine treatment providers and social media advertisements. Participants will be randomly assigned to M-ROCC or RSG and will be blinded to their treatment condition. The primary outcome for this study will be biochemically confirmed periods of abstinence from illicit opioids, as measured by self-reported use and randomly collected, video-observed oral fluid toxicology testing during the final 12 weeks of study participation. Secondary outcomes include changes in Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety and pain interference scores between baseline and week 24. RESULTS: The trial was funded by the National Institutes of Health, HEAL Initiative through NCCIH (R33AT010125). Data collection is projected to end by September 2023, and we expect publication of results in 2024. CONCLUSION: If the M-ROCC intervention is found to be effective in this format, it will demonstrate that live-online mindfulness groups can improve outcomes and address common co-morbidities like anxiety and pain during buprenorphine treatment.

Immunology of THymectomy And childhood CArdiac transplant (ITHACA): protocol for a UK-wide prospective observational cohort study to identify immunological risk factors of post-transplant lymphoproliferative disease (PTLD) in thymectomised children.

INTRODUCTION: Paediatric heart transplant patients are disproportionately affected by Epstein-Barr virus (EBV)-related post-transplant lymphoproliferative disease (PTLD) compared with other childhood solid organ recipients. The drivers for this disparity remain poorly understood. A potential risk factor within this cohort is the routine surgical removal of the thymus-a gland critical for the normal development of T-lymphocyte-mediated antiviral immunity-in early life, which does not occur in other solid organ transplant recipients. Our study aims to describe the key immunological differences associated with early thymectomy, its impact on the temporal immune response to EBV infection and subsequent risk of PTLD. METHODS AND ANALYSIS: Prospective and sequential immune monitoring will be performed for 34 heart transplant recipients and 6 renal transplant patients (aged 0-18 years), stratified into early (<1 year), late (>1 year) and non-thymectomy groups. Peripheral blood samples and clinical data will be taken before transplant and at 3, 6, 12 and 24 months post-transplant. Single cell analysis of circulating immune cells and enumeration of EBV-specific T-lymphocytes will be performed using high-dimensional spectral flow cytometry with peptide-Major Histocompatibilty Complex (pMHC) I/II tetramer assay, respectively. The functional status of EBV-specific T-lymphocytes, along with EBV antibodies and viral load will be monitored at each of the predefined study time points. ETHICS AND DISSEMINATION: Ethical approval for this study has been obtained from the North of Scotland Research Ethics Committee. The results will be disseminated through publications in peer-reviewed journals, presentations at scientific conferences and patient-centred forums, including social media. TRIAL REGISTRATION NUMBER: ISRCTN10096625.

Validation of the Short-Form 36 for Adolescents Undergoing Reduction Mammaplasty.

Health-related quality of life improvements after reduction mammaplasty have been reported by patients. Although instruments exist for adults, a validated outcomes survey is not available for adolescents. This study aims to validate the Short-Form 36 (SF-36) for adolescents undergoing reduction mammaplasty. Methods: Patients aged 12-21 years were prospectively recruited between 2008 and 2021 to unaffected or macromastia cohorts. Patients completed four baseline surveys: SF-36, Rosenberg Self-esteem Scale, Breast-related Symptoms Questionnaire, and Eating Attitudes Test. Surveys were repeated at 6 and 12 months postoperatively (macromastia cohort), and at 6 and 12 months from baseline (unaffected cohort). Content, construct, and longitudinal validity were assessed. Results: A total of 258 patients with macromastia (median age: 17.5 years), and 128 unaffected patients (median age: 17.0 years) were included. Content validity was established, and construct validity was fulfilled: internal consistency was confirmed for all domains (Cronbach alpha >0.7); convergent validity was satisfied through expected correlations between the SF-36 and Rosenberg Self-esteem Scale, Breast-related Symptoms Questionnaire, and Eating Attitudes Test, and known-groups validity was established through significantly lower mean scores in all SF-36 domains in the macromastia cohort compared with unaffected patients. Longitudinal validity was established by significant improvements in domain scores from baseline to 6 and 12 months postoperatively in patients with macromastia (P < 0.05, all). Conclusions: The SF-36 is a valid instrument for adolescents undergoing reduction mammaplasty. Although other instruments have been used for older patients, we recommend the SF-36 when assessing health-related quality of life changes in younger populations.

Trends in Outcomes and Variation by Race and Ethnicity in Pediatric Plastic Surgery in the United States.

The American College of Surgeons' National Surgical Quality Improvement Project-Pediatric Data manages a multicenter dataset for monitoring outcomes in pediatric surgical care. We explored trends in outcomes in the most frequently sampled current procedural terminology codes related to craniofacial and cleft lip and palate (CLP) surgical procedures over a 7-year period. Methods: We used National Surgical Quality Improvement Project-Pediatric Data on 28,147 pediatric patients who underwent plastic surgical procedures between January 1, 2012, and December 31, 2018. Eighteen relevant current procedural terminology codes were selected and sorted into two procedure groups: CLP and craniofacial. For each group, we explored trends in readmission, reoperation, extended length of stay, morbidity, and racial and ethnic variation. Results: The proportion of readmissions following CLP repair saw a significant reduction per year (from 3.6% to 1.7%). African American or Black CLP patients had significantly higher rates of readmission and extended length of stay when compared to the overall cohort. Asian and White CLP patients had significantly lower rates of experiencing an extended length of stay. For craniofacial cases, extended length of stay decreased significantly per year (from 7.7% to 2.8%). One possible driver of this change was a decrease in transfusion rates during the study period from 59% to 47%. Conclusions: Pediatric CLP and craniofacial cases saw significant improvements in safety, as indicated by reductions in readmission and extended length of stay. Given the racial differences observed, especially among CLP patients, continued research to identify and address systems of racism in health care remains a priority.

Advancing rapid cycle research in cancer care delivery: a National Cancer Institute workshop report.

Generating actionable research findings quickly and efficiently is critical for improving the delivery of cancer-related care and outcomes. To address this issue, the National Cancer Institute convened subject matter experts, researchers, clinicians, and patients for a 2-day virtual meeting in February 2022. The purpose of this meeting was to identify how rapid cycle interventional research methods can be used to generate findings useful in improving routine clinical practice. The meeting yielded an initial conceptualization of rapid cycle interventional research as being comprised of 6 key elements: use of iterative study designs; reliance on proximal primary outcomes; early and continued engagement with community and clinical partners; use of existing data sources to measure primary outcomes; facilitative features of the study setting and context; and consideration of appropriate rigor relative to intended use of findings. The meeting also identified the types of study designs that can be leveraged to conduct rapid cycle interventional research and provided examples of these; considered this approach from the perspective of key partners; described the clinical and data infrastructure, research resources, and key collaborations needed to support this work; identified research topics best addressed using this approach; and considered needed methodological advances. The National Cancer Institute is committed to exploring opportunities to encourage further development and application of this research approach as a means for better promoting improvements in the delivery of cancer-related care.

Do patients treated with Invisalign have less swelling after orthognathic surgery than those with fixed orthodontic appliances?

INTRODUCTION: Patients treated with perioperative Invisalign for orthognathic surgery may experience less postoperative swelling than those with fixed appliances because of a lack of mucosal irritation from bonded brackets and wires. The aims of this study were to (1) compare facial swelling after orthognathic surgery in subjects with Invisalign to those with fixed appliances using 3-dimensional (3D) subtraction imaging and (2) determine if the type of operation influences differences in swelling. METHODS: This is a retrospective case-control study. To be included in the case group (Invisalign), patients had to have had: (1) LeFort I and/or bilateral sagittal split osteotomies, with or without genioplasty, (2) perioperative orthodontic treatment using Invisalign, and (3) 3D photographs at postoperative timepoints 1 week (T1), 3-4 weeks (T2), and 5-7 weeks. A sex and operation-matched control group with fixed appliances (standard) was also included. The primary outcome variable was the volume of facial swelling, measured by subtraction imposition of the T1 and T2 3D images using reference images (5-7 weeks). RESULTS: Twenty-two subjects (36% female; mean age 20.7 ± 3.15 years) were included: Invisalign (n = 11) and standard (n = 11). For each group, 7 subjects had 1 operation (LeFort I or bilateral sagittal split osteotomies), and 4 had bimaxillary surgery ± genioplasty. At T1, the Invisalign group had significantly less swelling than the standard group (17.52 ± 10.79 cm3 vs 37.53 ± 14.62 cm3; P <0.001). By T2, the differences were no longer significant (6.62 ± 5.19 cm3 for Invisalign; 5.85 ± 4.39 cm3 for standard, P = 0.728). CONCLUSION: Subjects with Invisalign had significantly less facial swelling in the first postoperative week than those with fixed appliances.

Trends in Pediatric Head and Facial Trauma During the COVID-19 Pandemic.

INTRODUCTION: The effect of physical-distancing policies and school closures on pediatric health has been a topic of major concern in the United States during the coronavirus disease 2019 (COVID-19) pandemic. The objective of this study was to assess the immediate impact of these public policies on patterns of head and facial trauma in the pediatric population. MATERIALS AND METHOD: The Pediatric Health Information System (PHIS) was queried to identify patient encounters at 46 children's hospitals across the United States in 2016-2020. Encounters were included if resultant in ICD-10 diagnosis for head or facial trauma in a child under 18 between April 1 and June 30 in 2020 (first COVID-19 school closures) and during the same period in the previous 4 years (for comparison). RESULTS: A total of 170,832 patient encounters for pediatric head and facial trauma were recorded during the study period, including 28,030 (16.4%) in 2020 and 142,802 (83.6%) in 2016-2019. Patient encounters declined significantly in 2020 among children of all age groups relative to previous years. Relative reductions were greatest in children aged 11 to 17 (middle/high school) and 6 to 10 (elementary school), at -34.6% (95% confidence interval: -23.6%, -44%; P <0.001) and -27.7% (95% confidence interval: -18.4%, -36%; P <0.001). Variation in relative reductions by race/ethnicity, sex, and rural/urban status were not statistically significant. CONCLUSIONS: Physical-distancing policies and school closures at the start of the COVID-19 pandemic correlated with significant reductions in pediatric head and facial trauma patient encounters. As in-person activities resume, reductions in head and facial trauma during the pandemic may indicate a range of possible preventable injuries in the future.

Key factors influencing motivation among health extension workers and health care professionals in four regions of Ethiopia: A cross-sectional study.

BACKGROUND: Although Ethiopia has improved access to health care in recent years, quality of care remains low. Health worker motivation is an important determinant of performance and affects quality of care. Low health care workers motivation can be associated with poor health care quality and client experience, non-attendance, and poor clinical outcome. Objective this study sought to determine the extent and variation of health professionals' motivation alongside factors associated with motivation. METHODS: We conducted a facility based cross-sectional study among health extension workers (HEWs) and health care professionals in four regions: Amhara, Oromia, South nations, and nationalities people's region (SNNPR) and Tigray from April 15 to May 10, 2018. We sampled 401 health system workers: skilled providers including nurses and midwives (n = 110), HEWs (n = 210); and non-patient facing health system staff representing case team leaders, facility and district heads, directors, and officers (n = 81). Participants completed a 30-item Likert scale ranking tool which asked questions across 17 domains. We used exploratory factor analysis to explore latent motivation constructs. RESULTS: Of the 397 responses with complete data, 61% (95% CI 56%-66%) self-reported motivation as "very good" or "excellent". Significant variation in motivation was seen across regions with SNNPR scoring significantly lower on a five-point Likert scale by 0.35 points (P = 0.003). The exploratory factor analysis identified a three-factors: personal and altruistic goals; pride and personal satisfaction; and recognition and support. The personal and altruistic goals factor varied across regions with Oromia and SNNPR being significantly lower by 0.13 (P = 0.018) and 0.12 (P = 0.039) Likert points respectively. The pride and personal satisfaction factor were higher among those aged > = 30 years by 0.14 Likert scale points (P = 0.045) relative to those aged between 19-24years. CONCLUSIONS: Overall, motivation was high among participants but varied across region, cadre, and age. Workload, leave, and job satisfaction were associated with motivation.

Do older surgeons have safer hands? A retrospective cohort study.

BACKGROUND: For complex surgical procedures a volume-outcome relationship can often be demonstrated implicating multiple factors at a unit and surgeon specific level. This study aims to investigate this phenomenon in lung transplantation over a 30-year period with particular reference to surgeon age and experience, cumulative unit activity and time/day of transplant. METHODS: Prospective databases identified adult patients undergoing isolated lung transplantation at a single UK centre between June 1987 and October 2017. Mortality data was acquired from NHS Spine. Individual surgeon demographics were obtained from the General Medical Council. Student t-test, Pearson's Chi-squared, Logistic Regression, and Kaplan-Meier Survival analyses were performed using Analyse-it package for MicrosoftExcel and STATA/IC. RESULTS: 954 transplants (55.9% male, age 44.4 ± 13.8 years, 67.9% bilateral lung) were performed, with a median survival to follow-up of 4.37 years. There was no difference in survival by recipient gender (p = 0.661), between individual surgeons (p = 0.224), or between weekday/weekend procedures (p = 0.327). Increasing centre experience with lung transplantation (OR1.001, 95%CI: 1.000-1.001, p = 0.03) and successive calendar years (OR1.028, 95%CI: 1.005-1.052, p = 0.017) was associated with improved 5-year survival. Advancing surgeon age at the time of transplant (mean, 48.8 ± 6.6 years) was associated with improved 30-day survival (OR1.062, 95%CI: 1.019 to1.106, p = 0.003), which persisted 5 years post-transplant (OR1.043, 95%CI: 1.014-1.073, p = 0.003). Individual surgeon experience, measured by the number of previous lung transplants performed, showed a trend towards improved outcomes at 30 days (p = 0.0413) with no difference in 5-year survival (p = 0.192). CONCLUSIONS: Our study demonstrates a relationship between unit volume, increasing surgeon age and survival after lung transplantation. A transplant volume: outcome relationship was not seen for individual surgeons.

Heart transplantation in children and adults with Down syndrome: A single centre experience.

BACKGROUND: In recent years, rapid advances in cardiac surgery and changes in attitude towards patients with cognitive disability have led to these patients receiving cardiac transplantation. METHOD: This is a retrospective report describing the experience of four patients with Down Syndrome who received heart transplantation in a single institution. RESULTS: Anthracycline-induced cardiomyopathy was the most common cause of heart failure in this group (3/4). Two patients were bridged to transplantation, one by using a combination of extra-corporeal membrane oxygenation and biventricular assist device and the other by using a durable implantable left ventricular assist device. All the four patients are alive with the longest surviving patient 17 years after transplantation. Against strong hypothetical predictions, we observed no propensity for the development of post-transplant infections or lymphoproliferative disorders. CONCLUSION: Down Syndrome should not be the sole contraindication to heart transplantation. The decision for transplantation should be on a case-by-case basis provided adequate social support is in place.

A real world multi center study on efficacy and safety of natalizumab in Indian patients with multiple sclerosis.

BACKGROUND: Natalizumab (NTZ) is increasingly being used in Indian multiple sclerosis (MS) patients. There are no reports on its safety and efficacy, especially with respect to the occurrence of progressive multifocal leukoencephalopathy (PML). OBJECTIVES: To describe the patient characteristics, treatment outcomes, and adverse events, especially the occurrence of PML in NTZ-treated patients. METHODS: A multicentre ambispective study was conducted across 18 centres, from Jan 2012 to Dec 2021. Patients at and above the age of 18 years treated with NTZ were included. Descriptive and comparative statistics were applied to analyze data. RESULTS: During the study period of 9 years, 116 patients were treated with NTZ. Mean age of the cohort was 35.6 ± 9.7 years; 83/116 (71.6%) were females. Relapse rate for the entire cohort in the year before NTZ was 3.1 ± 1.51 while one year after was 0.20±0.57 (p = 0.001; CI 2.45 -3.35). EDSS of the entire cohort in the year before NTZ was 4.5 ± 1.94 and one year after was 3.8 ± 2.7 (p = 0.013; CI 0.16-1.36). At last follow up (38.3 ± 22.78 months) there were no cases of PML identified. CONCLUSIONS: Natalizumab is highly effective and safe in Indian MS patients, with no cases of PML identified at last follow up.

Neurology Exit Examination System in India: A Survey of Examiners' Perceptions and Recommendations.

Background: The traditional Neurology exit examination in India has remained unchanged over the last few decades. In developed countries, objective evaluation methods have replaced the traditional ones. A need for such methods has not been explored in India. Objective: We aimed to study the perceptions and key recommendations of Neurology examiners on the existing examination pattern. Material and Methods: We conducted an online survey of examiners perceptions and recommendations using a set of 10 multiple-choice questions and an open-ended question. Results: 46 examiners provided completed responses suitable for analysis. Nearly equal proportions (30%) of the examiners had 10 years, 10-25 years and >25 years' experience. 92% were not satisfied with current system, 95% did not find adequate time for correction of theory scripts, 90% felt that theory questions were random, and 95% had legibility issues. 84% felt that the practical exams do not test true learning, 98% felt the examination stress impairs the performance and 85% felt that there are no objective criteria to pass the candidate. 83% felt the current system-needed changes. The key suggestions provided by the examiners to improve the system included objective assessments like MCQ, OSCE, OSLER and DOPS, inclusion of larger number of short answer type questions and periodic internal assessments of the candidates. Conclusions: A vast majority of examiners favoured changes to the current examination system and provided key recommendations. A larger study is needed to extrapolate these findings to the rest of India.

Gender differences in the assessment, decision-making and outcomes for ventricular assist devices and heart transplantation: An analysis from a UK transplant center.

PURPOSE: There are marked gender differences in all etiologies of advanced heart failure. We sought to determine whether there is evidence of gender-specific decision making for transplant assessments, and how gender effects outcomes. METHODS: Retrospective analysis of adult heart transplant assessments at a single UK center between April 2015 and March 2020. RESULTS: Females were 32% of referrals (N = 137 females, 285 males), with marked differences between diagnoses - 11% ischemic and 43% of adult congenital. Females were younger, shorter, weighed less, and had lower pulmonary pressures. Females were much less likely to receive a ventricular assist device (13%). Blood type "O" females were relatively more likely compared to males to receive a transplant (45%). Comparing males and females who received a ventricular assist device, both had similar levels of high pulmonary pressures, indicating consistent decision-making based on hemodynamics to implant a device. Overall survival was better for females (in noncongenital patients), and this was due to female patients who were not accepted for transplant or a ventricular assist device being more often "too well for transplant," rather than in males when they were more often "unsuitable." CONCLUSIONS: Marked gender differences exist at all stages of the heart transplant assessment pathway. Appropriate decision-making based on clinical grounds is shown with less transplants in male blood type "O"s and hemodynamic criteria for ventricular assist device implantation in both genders. Further studies are needed to determine if there is a wider community bias in advanced heart failure treatments for females.

Does infection predispose to thrombosis during long-term ventricular assist device support?

BACKGROUND: Infections and thrombotic events remain life-threatening complications in patients with ventricular assist devices (VAD). METHODS: We describe the relationship between both events in our cohort of patients (n = 220) supported with the HeartWare VAD (HVAD). This is a retrospective analysis of patients undergoing HVAD implantation between July 2009 and March 2019 at the Freeman Hospital, Newcastle upon Tyne, United Kingdom. RESULTS: Infection was the most common adverse event in HVAD patients, with 125 patients (56.8%) experiencing ≥ one infection (n = 168, 0.33 event per person year (EPPY)), followed by pump thrombosis (PT) in 61 patients (27.7%, 0.16 EPPY). VAD-specific infections were the largest group of infections. Of the 125 patients who had an infection, 66 (53%) had a thrombotic event. Both thrombotic events and infections were related to the duration of support, though there was only limited evidence that infections predispose to thrombosis. Those with higher than median levels of C-reactive protein during the infection were more likely to have an ischaemic stroke (IS) (34.5% vs 16.7%, p = .03), though not PT or a combined thrombotic event (CTE: first PT or IS). However, in multivariate analysis, there was no significant effect of infection predisposing to CTE. CONCLUSIONS: Infection and thrombotic events are significant adverse events related to the duration of support in patients receiving HVADs. Infections do not clearly predispose to thrombotic events.

Translating research into practice-implementation recommendations for pediatric rheumatology; Proceedings of the childhood arthritis and rheumatology research alliance 2020 implementation science retreat.

The translation of research findings into clinical practice is challenging, especially fields like in pediatric rheumatology, where the evidence base is limited, there are few clinical trials, and the conditions are rare and heterogeneous. Implementation science methodologies have been shown to reduce the research- to- practice gap in other clinical settings may have similar utility in pediatric rheumatology. This paper describes the key discussion points from the inaugural Childhood Arthritis and Rheumatology Research Alliance Implementation Science retreat held in February 2020. The aim of this report is to synthesize those findings into an Implementation Science Roadmap for pediatric rheumatology research. This roadmap is based on three foundational principles: fostering curiosity and ensuring discovery, integration of research and quality improvement, and patient-centeredness. We include six key steps anchored in the principles of implementation science. Applying this roadmap will enable researchers to evaluate the full range of research activities, from the initial clinical design and evidence acquisition to the application of those findings in pediatric rheumatology clinics and direct patient care.