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The COVID-19 pandemic has led governments worldwide to impose extensive restrictions on citizens, some of which may have long-term impact after their removal. Education is arguably the policy domain where closure policies are anticipated to lead to greatest lasting loss, in this case learning loss. Currently, limited data exists from which researchers and practitioners can draw insightful conclusions about how to remedy the problem. In this paper, we outline the global pattern in pandemic school-closure periods and illustrate data needs through the examples drawn from Brazil and India, two large countries with decentralised education systems, and which experienced prolonged periods of school closures during the pandemic. We conclude with a series of recommendations for building an improved data environment at government, school and household levels, to serve the building back agenda in education.

Objectives To investigate the effect of ACE inhibitors (ACEi) on the incidence of scleroderma renal crisis (SRC) when given prior to SRC in the prospectively collected cohort from the European Scleroderma Trial and Research Group (EUSTAR). Methods SSc patients without prior SRC and at least one follow-up visit were included and analyzed regarding SRC, arterial hypertension, and medication focusing on antihypertensive medication and glucocorticoids (GC). Results Out of 14,524 patients in the database, we identified 7648 patients with at least one follow-up. In 27,450 person-years (py), 102 patients developed SRC representing an incidence of 3.72 (3.06–4.51) per 1000 py. In a multivariable time-to-event analysis adjusted for age, sex, disease severity, and onset, 88 of 6521 patients developed SRC. The use of ACEi displayed an increased risk for the development of SRC with a hazard ratio (HR) of 2.55 (95% confidence interval (CI) 1.65–3.95). Adjusting for arterial hypertension resulted in a HR of 2.04 (95%CI 1.29–3.24). There was no evidence for an interaction of ACEi and arterial hypertension (HR 0.83, 95%CI 0.32–2.13, p = 0.69). Calcium channel blockers (CCB), angiotensin receptor blockers (ARB), endothelin receptor antagonists, and GC—mostly in daily dosages below 15 mg of prednisolone—did not influence the hazard for SRC. Conclusions ACEi in SSc patients with concomitant arterial hypertension display an independent risk factor for the development of SRC but are still first choice in SRC treatment. ARBs might be a safe alternative, yet the overall safety of alternative antihypertensive drugs in SSc patients needs to be further studied.

O presente artigo tem como objetivo refletir, por meio de um estudo teorico, acerca do existencial cuidado ( Sorge ) no pensamento de Martin Heidegger e amor (Liebe ) em Ludwig Binswanger. O texto retoma os principais aspectos da forma como ambos compreendem a nocao de cuidado e amor, desdobrando criticamente o impasse gerado a partir dai. Demonstra-se que o cerne da querela se da no modo como Binswanger compreende e interpreta o ser-no-mundo ( In-der-Welt-sein ) heideggeriano, ligando-o a nocao de ser-para-alem-do-mundo ( Uber-die-Welt-hinaus-sein ). O psiquiatra suico procede desse modo na medida em que julga ter identificado um limite e uma carencia do elemento eternidade no modo como Heidegger desenvolve sua ontologia fundamental. Com tal apontamento, Binswanger elege a tonalidade do amor como fundamento de toda relacao, que faz dessa experiencia de infinito sua forma de ser. No bojo de tal apontamento se encontra o desenvolvimento da Daseinsanalise como o desdobramento – a principio psiquiatrico – de uma relacao clinica pautada pelo amor como meio do acesso fundamental ao outro e como elemento que promove a cura. O artigo conclui que tal indicacao binswangeriana recai sutilmente em elementos instrumentais e produtivistas, uma vez que Binswanger reproduz elementos da tecnica justamente la onde tais elementos deveriam permanecer inoperantes.

Esse trabalho tem como objetivo fazer uma análise das expressões e sentidos que profissionais, mães e pais vêm dando aos diferentes exercícios da parentalidade em tempos de confinamento, como efeito da crise pandêmica que vivemos no Brasil em decorrência do novo coronavírus. Por meio da análise de 26 vídeos, distribuídos entre lives e vídeos curtos disponíveis na plataforma do Youtube, escolhidos a partir do cruzamento dos termos parentalidade e pandemia, propusemos o desafio de pensar o exercício da parentalidade em relações de convívio das famílias com crianças e adolescentes. Nossa proposta era entender como adultos e crianças da família que convivem no mesmo espaço neste momento de pandemia, em suas diversas configurações e condições, têm experimentado o tempo, marcado pela ausência de intermitência, com o convívio praticamente ininterrupto com elas. Muitas famílias de camadas médias e altas se depararam, pela primeira vez, com a necessidade de cuidado integral de sua prole, que em geral é dividido com escola, babás, empregada doméstica, além de avós. Foi possível notar que embora as crianças sejam parte fundamental da trama e muitos dos questionamentos se façam a partir da presença permanente delas em casa, nenhuma das lives que apareceram no Youtube tem a participação das mesmas ou trata das suas percepções sobre os tempos de confinamento. Nota-se também uma certa homogeneidade das pessoas que proferiram as lives em termos de classe social, região do país e profissão, sendo basicamente mulheres brancas de camadas médias das regiões sul e sudeste do país, psicólogas e pedagogas. As famílias para as quais as lives se dirigem são formadas por casais cis, heterossexuais, brancos, de camadas médias e altas, sem que essas características sejam sequer apontadas. A perspectiva interseccional não aparece.

The present work presents the strategy-building path and the execution of the Psychology internship proposal remotely, developed over the first semester of 2020, at a university in the city of Rio de Janeiro, due to the COVID-19 pandemic. With a qualitative approach, through documentary research on the records of meetings held with academic management, supervisory professors and students, the official documents published by the Ministério da Educação, the Conselho Nacional de Educação, the Conselho Nacional de Saúde, the Conselho Federal de Psicologia and the Associação Brasileira de Ensino de Psicologia, we propose reflections and we expose ethical-political tensions in the initial context of the pandemic and its interfaces with teaching. The construction of proposal for that university was inspired by the National Curriculum Guidelines for undergraduate courses in Psychology and the Fundamental Principles of the Code of Ethics for the Professional Psychologist regarding other activities of the psi professional, such as the preparation of booklets and ebooks, the setting up of a script and podcast recording, circles of conversation. The adaptation of the tasks and the construction of new tasks for the curricular internship in the remote format started to be, for the most part, recommended in a booklet published in August / 2020 by the Associação Brasileira de Ensino de Psicologia and by the Conselho Federal de Psicologia as guidance of internship practices for the second half of 2020 or while the pandemic is in an exceptional state. El presente trabajo presenta la ruta de construcción de estrategia y la ejecución de la propuesta de pasantía de Psicología de manera remota, desarrollada durante el primer semestre de 2020, en una universidad de la ciudad de Río de Janeiro, debido a la pandemia de COVID-19. Con un enfoque cualitativo, a través de la investigación documental de los registros de reuniones mantenidas con la dirección académica, profesores supervisores y estudiantes, los documentos oficiales publicados por el Ministério da Educação, el Conselho Nacional de Educação, el Conselho Nacional de Saúde, el Conselho Federal de Psicologia y la Associação Brasileira de Ensino em Psicologia, proponemos reflexiones y exponemos tensiones ético-políticas en el contexto inicial de la pandemia y sus interfaces con la enseñanza. La construcción de la propuesta para esa universidad fue inspirado en los Lineamientos Curriculares Nacionales para las carreras de Licenciatura en Psicología y los Principios Fundamentales del Código de Ética del Psicólogo Profesional en relación con otras actividades del profesional psi, como la elaboración de folletos y libros electrónicos, la puesta en marcha de un guión y grabación de podcast, Círculos de conversación. La adecuación de las tareas y la construcción de nuevas tareas para la pasantía curricular en el formato remoto comenzó a ser recomendada, en su mayor parte, en un folleto publicado en agosto / 2020 por la Associação Brasileira de Ensino em Psicologia y por el Conselho Federal de Psicologia como guía de prácticas de pasantías para el segundo semestre de 2020 o mientras la pandemia se encuentre en un estado excepcional. O presente trabalho apresenta o percurso de construção de estratégias e a execução da proposta de estágio em Psicologia de forma remota, desenvolvida ao longo do primeiro semestre de 2020, em uma universidade da cidade do Rio de Janeiro, por conta da pandemia de COVID-19. Com abordagem qualitativa, através de pesquisa documental nos registros das reuniões desenvolvidas com gestão acadêmica, docentes supervisores e discentes, dos documentos oficiais publicados pelo Ministério da Educação, Conselho Nacional de Educação, Conselho Nacional de Saúde, Conselho Federal de Psicologia e Associação Brasileira de Ensino de Psicologia, propomos reflexões e expomos tensões ético-políticas no contexto inicial da pandemia e suas interfaces com o ensino. A construção da proposta para a referida universidade foi inspirada nas Diretrizes Curriculares Nacionais dos cursos de graduação em Psicologia e nos Princípios Fundamentais do Código de Ética do Profissional Psicólogo no que tange outros fazeres profissionais como elaboração de cartilhas e ebooks, montagem de roteiro e gravação de podcast, rodas de conversa. Concluímos que a adaptação dos fazeres e a construção de novos fazeres para o estágio curricular no formato remoto, elaborados pelos autores, passaram a ser, em sua grande maioria, recomendadas em cartilha divulgada em agosto/2020 pela Associação Brasileira de Ensino em Psicologia e pelo Conselho Federal de Psicologia como orientação de práticas de estágio para o segundo semestre de 2020 ou enquanto durar o estado de excepcionalidade da pandemia.

O presente trabalho apresenta o percurso de construção de estratégias e a execução da proposta de estágio em Psicologia de forma remota, desenvolvida ao longo do primeiro semestre de 2020, em uma universidade da cidade do Rio de Janeiro, por conta da pandemia de COVID-19. Com abordagem qualitativa, através de pesquisa documental nos registros das reuniões desenvolvidas com gestão acadêmica, docentes supervisores e discentes, dos documentos oficiais publicados pelo Ministério da Educação, Conselho Nacional de Educação, Conselho Nacional de Saúde, Conselho Federal de Psicologia e Associação Brasileira de Ensino de Psicologia, propomos reflexões e expomos tensões ético-políticas no contexto inicial da pandemia e suas interfaces com o ensino. A construção da proposta para a referida universidade foi inspirada nas Diretrizes Curriculares Nacionais dos cursos de graduação em Psicologia e nos Princípios Fundamentais do Código de Ética do Profissional Psicólogo no que tange outros fazeres profissionais como elaboração de cartilhas e ebooks, montagem de roteiro e gravação de podcast, rodas de conversa. Concluímos que a adaptação dos fazeres e a construção de novos fazeres para o estágio curricular no formato remoto, elaborados pelos autores, passaram a ser, em sua grande maioria, recomendadas em cartilha divulgada em agosto/2020 pela Associação Brasileira de Ensino em Psicologia e pelo Conselho Federal de Psicologia como orientação de práticas de estágio para o segundo semestre de 2020 ou enquanto durar o estado de excepcionalidade da pandemia.

Scholars aiming at developing a more comprehensive and integrated understanding of workplace and social phenomena have taken a keen interest in the incorporation of biological processes into organizational and behavioral research. This work seeks to introduce organizational and behavioral scholars to the basic aspects of research involving physiological data collection, with the aim at both describing in detail specific procedural protocols as well as facilitating the application and comprehension of this method. Specifically, in this paper, we focus on two endocrine markers that account for hormonal responses, namely cortisol and testosterone. We first review empirical literature measuring at least one of the endocrine measures of inquiry and then discuss both methodological and conceptual patterns inherent in this kind of research. More importantly, besides elaborating upon the methodological advantages, as the shortcomings associated with the measurement of these endocrine indicators, we offer a practical description of standard research protocols involved in studies that incorporate measures of either cortisol or testosterone. On the pretense of supporting scholars become better acquainted with the method and its procedures, we conclude by presenting an empirical example in which we illustrate how to measure endocrine activity in an actual research setting.

The article "On-drug and drug-free remission by baseline symptom duration: abatacept with methotrexate in patients with early rheumatoid arthritis", written by Vivian P.Bykerk, was originally published Online First without open access.

Objective To establish an expert consensus on which criteria are the most appropriate in clinical practice to refer patients with systemic sclerosis (SSc) for right heart catheterisation (RHC) when pulmonary hypertension (PH) is suspected. Methods A three stage internet based Delphi consensus exercise involving worldwide PH experts was designed. In the first stage, a comprehensive list of domains and items combining evidence based indications and expert opinions were obtained. In the second and third stages, experts were asked to rate each item selected in the list. After each of stages 2 and 3, the number of items and criteria were reduced according to a cluster analysis. Results A literature search and the opinions of 47 experts participating in Delphi stage 1 provided a list of seven domains containing 142 criteria. After stages 2 and 3, these domains and tools were reduced to three domains containing eight tools: clinical (progressive dyspnoea over the past 3 months, unexplained dyspnoea, worsening of WHO dyspnoea functional class, any finding on physical examination suggestive of elevated right heart pressures and any sign of right heart failure), echocardiography (systolic pulmonary artery pressure >45 mm Hg and right ventricle dilation) and pulmonary function tests (diffusion lung capacity for carbon monoxide Conclusions Among experts in pulmonary arterial hypertension–SSc, a core set of criteria for clinical practice to refer SSc patients for RHC has been defined by Delphi consensus methods. Although these indications are recommended by this expert group to be used as an interim tool, it will be necessary to formally validate the present tools in further studies.

Objective. Anti-tumor necrosis factor agents (anti-TNFs) are frequently used in combination with methotrexate to treat rheumatoid arthritis (RA). We investigated the effect of background methotrexate dose, in combination with anti-TNF certolizumab pegol (CZP), on treatment efficacy and safety in RA patients. Methods. A pre-specified subgroup analysis comparing two methotrexate dose categories (10 and ≤15 mg/week; and >15 mg/week. Results. 638, 635 and 325 patients received CZP 200 mg, CZP 400 mg and placebo, respectively. At Week 24, treatment responses in both CZP groups were uninfluenced by baseline methotrexate dose category, and were superior to placebo group, for all investigated endpoints: ACR20/50/70, DAS28(ESR) and mTSS. TEAE incidence rates were higher in patients receiving methotrexate ≥15 mg/week for most TEAE types, across treatment groups. Conclusion. CZP efficacy was not affected by background methotrexate dose category. It can be hypothesized that to minimize TEAEs, background methotrexate doses could

Contains fulltext : 172407.pdf (Publisher’s version ) (Closed access) IMPORTANCE: Digital ulcers in patients with systemic sclerosis are associated with pain and poor quality of life. Endothelin-1 promotes vasculopathy in systemic sclerosis after macitentan, an endothelin-1 blocker. OBJECTIVE: To evaluate the efficacy of macitentan in reducing the number of new digital ulcers in patients with systemic sclerosis. DESIGN, SETTING, AND PARTICIPANTS: Two international, randomized, double-blind, placebo-controlled trials (DUAL-1, DUAL-2) were conducted between January 2012 and February 2014. Participants were patients with systemic sclerosis and active digital ulcers at baseline. Target enrollment for each study was 285 patients. INTERVENTIONS: Patients were randomized (1:1:1) to receive oral doses of 3 mg of macitentan, 10 mg of macitentan, or placebo once daily and stratified according to number of digital ulcers at baseline (3). MAIN OUTCOMES AND MEASURES: The primary outcome for each trial was the cumulative number of new digital ulcers from baseline to week 16. Treatment effect was expressed as the ratio between treatment groups. RESULTS: In DUAL-1, among 289 randomized patients (mean age 51.2 years; 85.8% women), 226 completed the study. The adjusted mean number of new digital ulcers per patient over 16 weeks was 0.94 in the 3-mg macitentan group (n = 95) and 1.08 in the 10-mg macitentan group (n = 97) compared with 0.85 in the placebo group (n = 97) (absolute difference, 0.09 [95% CI, -0.37 to 0.54] for 3 mg of macitentan vs placebo and 0.23 [-0.27 to 0.72] for 10 mg of macitentan vs placebo). Among 265 patients randomized in DUAL-2 (mean age 49.6 years; 81.9% women), 216 completed the study. In DUAL-2, the adjusted mean number of new digital ulcers was 1.44 in the 3-mg macitentan group (n = 88) and 1.46 in the 10-mg macitentan group (n = 88) compared with 1.21 in the placebo group (n = 89) (absolute difference, 0.23 [95% CI, -0.35 to 0.82] for 3 mg of macitentan vs placebo and 0.25 [95% CI, -0.34 to 0.84] for 10 mg of macitentan vs placebo). Adverse events more frequently associated with macitentan than with placebo were headache, peripheral edema, skin ulcer, anemia, upper respiratory tract infection, diarrhea, and nasopharyngitis. CONCLUSIONS AND RELEVANCE: Among patients with systemic sclerosis and active ischemic digital ulcers, treatment with macitentan did not reduce new digital ulcers over 16 weeks. These results do not support the use of macitentan for the treatment of digital ulcers in this patient population. TRIAL REGISTRATION: clinicaltrials.gov Identifiers: NCT01474109, NCT01474122.

Objective. Outcome measures for pulmonary arterial hypertension associated with systemic sclerosis (PAH-SSc) are only partially validated. The aim of the present study was to establish an expert consensus regarding which outcome measures are most appropriate for clinical trials in PAH-SSc. Methods. Sixty-nine PAH-SSc experts (rheumatologists, cardiologists, pulmonologists) rated a list of disease domains and measurement tools in an Internet-based 3-stage Delphi consensus study. In stages 2 and 3, the medians of domains and measurement tools and frequency distributions of ratings, along with requests for re-ratings, were distributed to respondents to provide feedback. A final score of items was identified by means of cluster analysis. Results. The experts judged the following domains and tools as most appropriate for randomized controlled trials in PAH-SSc: lung vascular/pulmonary arterial pressure and cardiac function both measured by right heart catheterization and echocardiography, exercise testing measured by 6-minute walking test and oxygen saturation at exercise, severity of dyspnea measured on a visual analog scale, discontinuation of treatment measured by (serious) adverse events, quality of life/activities of daily living measured by the Short Form 36 and Health Assessment Questionnaire disability index, and global state assessed by physician measured by survival. Conclusion. Among experts in PAH-SSc, a core set of outcome measures has been defined for clinical trials by Delphi consensus methods. Although these outcome measures are recommended by this expert group to be used as an interim tool, it will be necessary to formally validate the present measures, as well as potential research measures, in further studies.

Purpose:The optimal treatment of systemic sclerosis (SSc) is a challenge because the pathogenesis of SSc is unclear and it is an uncommon and clinically heterogeneous disease affecting multiple organ systems. The aim of the European League Against Rheumatism (EULAR) Scleroderma Trials and Research group (EUSTAR) was to develop evidence-based, consensus-derived recommendations for the treatment of SSc.Methods:To obtain and maintain a high level of intrinsic quality and comparability of this approach, EULAR standard operating procedures were followed. The task force comprised 18 SSc experts from Europe, the USA and Japan, two SSc patients and three fellows for literature research. The preliminary set of research questions concerning SSc treatment was provided by 74 EUSTAR centres.Results:Based on discussion of the clinical research evidence from published literature, and combining this with current expert opinion and clinical experience, 14 recommendations for the treatment of SSc were formulated. The final set includes the following recommendations: three on SSc-related digital vasculopathy (Raynaud’s phenomenon and ulcers); four on SSc-related pulmonary arterial hypertension; three on SSc-related gastrointestinal involvement; two on scleroderma renal crisis; one on SSc-related interstitial lung disease and one on skin involvement. Experts also formulated several questions for a future research agenda.Conclusions:Evidence-based, consensus-derived recommendations are useful for rheumatologists to help guide treatment for patients with SSc. These recommendations may also help to define directions for future clinical research in SSc.

Interstitial lung diseases (ILD), including those related to connective tissue disease (CTD), and idiopathic pulmonary fibrosis (IPF) carry high morbidity and mortality. Great efforts are under way to develop and investigate meaningful treatments in the context of clinical trials. However, efforts have been challenged by a lack of validated outcome measures and by inconsistent use of measures in clinical trials. Lack of consensus has fragmented effective use of strategies in CTD-ILD and IPF, with a history of resultant difficulties in obtaining agency approval of treatment interventions. Until recently, the patient perspective to determine domains and outcome measures in CTD-ILD and IPF had never been applied. Efforts described here demonstrate unequivocally the value and influence of patient involvement on core set development. Regarding CTD-ILD, this is the first OMERACT working group to directly address a manifestation/comorbidity of a rheumatic disease (ILD) as well as a disease not considered rheumatic (IPF). The OMERACT 11 proceedings of the CTD-ILD Working Group describe the forward and lateral process to include both the medical and patient perspectives in the urgently needed identification of a core set of preliminary domains and outcome measures in CTD-ILD and IPF.

Rationale: Clinical trial design in interstitial lung diseases (ILDs) has been hampered by lack of consensus on appropriate outcome measures for reliably assessing treatment response. In the setting of connective tissue diseases (CTDs), some measures of ILD disease activity and severity may be confounded by non-pulmonary comorbidities. Methods: The Connective Tissue Disease associated Interstitial Lung Disease (CTD-ILD) working group of Outcome Measures in Rheumatology-a non-profit international organisation dedicated to consensus methodology in identification of outcome measures-conducted a series of investigations which included a Delphi process including >248 ILD medical experts as well as patient focus groups culminating in a nominal group panel of ILD experts and patients. The goal was to define and develop a consensus on the status of outcome measure candidates for use in randomised controlled trials in CTD-ILD and idiopathic pulmonary fibrosis (IPF). Results: A core set comprising specific measures in the domains of lung physiology, lung imaging, survival, dyspnoea, cough and health-related quality of life is proposed as appropriate for consideration for use in a hypothetical 1-year multicentre clinical trial for either CTD-ILD or IPF. As many widely used instruments were found to lack full validation, an agenda for future research is proposed. Conclusion: Identification of consensus preliminary domains and instruments to measure them was attained and is a major advance anticipated to facilitate multicentre RCTs in the field.

Objective: To develop a provisional core set of response measures for clinical trials of systemic sclerosis (SSc). Methods: The Scleroderma Clinical Trials Consortium (SCTC) conducted a structured, 3-round Delphi exercise to reach consensus on a core set of measures for clinical trials of SSc. Round 1 asked the SCTC investigators to list items in 11 pre-defined domains (skin, musculoskeletal, cardiac, pulmonary, cardio-pulmonary, gastrointestinal, renal, Raynaud phenomenon and digital ulcers, health-related quality of life and function, global health, and biomarkers) for SSc clinical trials. Round 2 asked respondents to rate the importance of the chosen items and was followed by a meeting, during which the Steering Committee discussed the feasibility, reliability, redundancy and validity of the items. Round 3 sought to obtain broader consensus on the core set measures. Members also voted on items that had data on feasibility but lacked data on reliability and validity, but may still be useful research outcome measures for future trials. Results: A total of 50 SCTC investigators participated in round 1, providing 212 unique items for the 11 domains. In all, 46 (92%) participants responded in round 2 and rated 177 items. The ratings of 177 items were reviewed by the Steering Committee and 31 items from the 11 domains were judged to be appropriate for inclusion in a 1-year multi-centre clinical trial. In total, 40 SCTC investigators completed round 3 and ranked 30 of 31 items as acceptable for inclusion in the core set. The Steering Committee also proposed 14 items for a research agenda. Conclusion: Using a Delphi exercise, we have developed a provisional core set of measures for assessment of disease activity and severity in clinical trials of SSc.

Systemic sclerosis (SSc), also known as scleroderma, is a complex, multisystem disease that results in severe morbidity, disability, and life-threatening complications. The wide range of biological systems clinically involved, and the large spectrum of disease activity and damage that occurs in this disease have limited clinical investigation of SSc, especially therapeutic trials. The OMERACT 6 Workshop on Systemic Sclerosis was conceived as a starting point for the process of assessing the current state of the science in outcome assessment in SSc and then setting a realistic research agenda and priorities for future work in this area This article reviews the current status of assessment tools for research in SSc within the main fundamental domains of illness in SSc, including problems related to skin, pulmonary, cardiac, peripheral vascular (Raynaud's phenomenon and digital ulceration), renal, and musculoskeletal systems as well as health-related quality of life and physical functioning. The current level of validation of outcome measures in SSc is assessed according to the guidelines set forth by prior OMERACT meetings.

Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a lack of evidence, however, specific recommendations have not been made regarding non-pharmacological interventions (e.g. behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL in SSc. The Scleroderma Patient-centred Intervention Network (SPIN) was recently organised to address this gap. SPIN is comprised of patient representatives, clinicians, and researchers from Canada, the USA, and Europe. The goal of SPIN, as described in this article, is to develop, test, and disseminate a set of accessible interventions designed to complement standard care in order to improve HRQoL outcomes in SSc., The initial organisational meeting for SPIN was funded by a Canadian Institutes of Health Research (CIHR) Meetings, Planning, and Dissemination grant to B.D. Thombs (KPE-109130), Sclerodermie Quebec, and the Lady Davis Institute for Medical Research of the Jewish General Hospital, Montreal, Quebec. SPIN receives finding support from the Sclemderma Society of Ontario, the Scleroderma Society of Canada, and Sclerodermie Quebec. B.D. Thombs and M. Hudson are supported by New Investigator awards from the CIHR, and Etablissement de Jeunes Chercheurs awards from the Fonds de la Recherche en Sante Quebec (FRSQ). M. Baron is the director of the Canadian Scleroderma Research Group, which receives grant folding from the CIHR, the Scleroderma Society of Canada and its provincial chapters, Scleroderma Society of Ontario, Sclerodermie Quebec, and the Ontario Arthritis Society, and educational grants from Actelion Pharmaceuticals and Pfizer. M.D. Mayes and S. Assassi are supported by the NIH/NIAMS Scleroderma Center of Research Translation grant no. P50-AR054144. S.J. Motivala is supported by an NIH career development grant (K23 AG027860) and the UCLA Cousins Center for Psychoneuroimmunology. D. Khanna is supported by a NIH/NIAMS K23 AR053858-04) and NIH/NIAMS U01 AR057936A, the National Institutes of Health through the NIH Roadmap for Medical Research Grant (AR052177), and has served as a consultant or on speakers bureau for Actelion, BMS, Gilead, Pfizer, and United Therapeutics.