Research Alliance Research Articles

How to: share and reuse data - challenges and solutions from PrIMAVeRa project.

Data sharing accelerates scientific progress and improves evidence quality. Even though journals and funding institutions require investigators to share data, only a small part of studies made their data publicly available upon publication. The procedures necessary to share retrospective data for re-use in secondary data analysis projects can be cumbersome. Predicting the Impact of Monoclonal Antibodies & Vaccines on Antimicrobial Resistance (PrIMAVeRa) is a European research project that aims to develop mathematical models and an epidemiological repository to assess the impact of vaccines and monoclonal antibodies on antimicrobial resistance (AMR). To accomplish the project aim, Work Package 3 was responsible for gathering historical anonymized individual patient datasets. Through a systematic search we have identified 108 eligible studies for data sharing; of which eight have completed all legal requirements and shared their datasets, with data from four infectious syndromes and seven resistant pathogens. The AMR data gathered in PrIMAVeRa project is publicly available in European Clinical Research Alliance on Infectious Disease epidemiology network platform (https://epi-net.eu/primavera/about/anonymized-individual-patient-data/). Challenges and possible solutions in data sharing activities were mapped and discussed: lack of researchers' interest in sharing data, cumbersome ethical and legal requirements, laborious data management procedures, specific requirements for public data access, insufficient training and funding. We expect that experience gained in this project can be useful to improve data sharing; and that the datasets gathered can be used in future AMR projects.

Effect of an Electronic Pill Bottle on Hydroxychloroquine Adherence in Pediatric Lupus: Results of a Novel Direct-to-Family Pilot Trial.

The objective of this study was to evaluate the preliminary effectiveness of an electronic pill bottle with automated reminders on hydroxychloroquine (HCQ) adherence in children with pediatric systemic lupus erythematosus (pSLE). This was a self-controlled, open label, direct-to-family pilot trial. Children with pSLE treated with HCQ were recruited from the Childhood Arthritis and Rheumatology Research Alliance Registry. All participants received a pill bottle with a sensor in the cap to record openings and provide automated reminders, which were activated after a two-week run-in. The primary outcome was a change in adherence measured using the pill bottle over six months. Secondary outcomes included plasma HCQ concentrations and Medication Adherence Self-Report Inventory (MASRI) scores, collected during four home visits. An exploratory post hoc analysis examined adherence patterns over time. Overall adherence was high and did not change over six months (mean ± SD proportion of recorded out of expected pill bottle openings, 0.86 ± 0.20 and 0.89 ± 0.16,P= 0.590). A post hoc analysis grouped participants by adherence pattern. The group with variable adherence, compared with the group with persistent high adherence, had lower dose-adjusted HCQ concentrations at baseline (0.387 vs 0.627 ng/mL/mg,P= 0.04) and trended toward lower MASRI scores (77.1 vs 93.4,P= 0.09). After six months, there were no differences in HCQ concentrations or MASRI by group. Automated reminders did not improve adherence to HCQ for children with pSLE, although the ability to detect effect was limited by a high baseline adherence and small sample size. Post hoc analyses identified different adherence patterns and a subgroup of patients with low HCQ concentrations who could be targeted for future adherence interventions.

Peer Review Statement

All papers published in this volume have been reviewed through processes administered by the Editors. Reviews were conducted by expert referees to the professional and scientific standards expected of a proceedings journal published by IOP Publishing. • Type of peer review: Single Anonymous • Conference submission management system: Morressier • Number of submissions received: 13 • Number of submissions sent for review: 13 • Number of submissions accepted: 10 • Acceptance Rate (Submissions Accepted / Submissions Received × 100): 76.9 • Average number of reviews per paper: 2.2 • Total number of reviewers involved: 9 • Contact person for queries: Name: Martina Campajola Email: m.campajola@eera-set.eu Affiliation: European Research Alliance - EERA

3D Ultrasound Localization Microscopy of the Nonhuman Primate Brain

Haemodynamic changes occur in stroke and neurodegenerative diseases. Developing imaging techniques allowing the invivo visualisation and quantification of cerebral blood flow would help better understand the underlying mechanism of these cerebrovascular diseases. 3D ultrasound localization microscopy (ULM) is a recently developed technology that can map the microvasculature of the brain at large depth and has been mainly used until now in rodents. In this study, we tested the feasibility of 3D ULM of the nonhuman primate (NHP) brain with a single 256-channel programmable ultrasound scanner. We achieved a highly resolved vascular map of the macaque brain at large depth (down to 3cm) in presence of craniotomy and durectomy using an 8-MHz multiplexed matrix probe. We were able to distinguish vessels as small as 26.9 μm. We also demonstrated that transcranial imaging of the macaque brain at similar depth was feasible using a 3-MHz probe and achieved a resolution of 60 μm. This work paves the way to clinical applications of 3D ULM. In particular, transcranial 3D ULM in humans could become a tool for the non-invasive study and monitoring of the brain cerebrovascular changes occurring in neurological diseases. This work was supported by the New Frontier in Research Fund (NFRFE-2022-00590), by the Canada Foundation for Innovation under grant 38095, by the Natural Sciences and Engineering Research Council of Canada (NSERC) under discovery grant RGPIN-2020-06786, by Brain Canada under grant PSG2019, and by the Canadian Institutes of Health Research (CIHR) under grant PJT-156047 and MPI-452530. Computing support was provided by the Digital Research Alliance of Canada.

Proteomics in Acute Heart Transplant Rejection, On Behalf of the GRAfT Investigators.

Proteomic phenotyping can provide insights into rejection pathophysiology, novel biomarkers, and therapeutic targets. Within the prospective, multicenter Genomic Research Alliance for Transplantation study, 181 proteins were evaluated from blood drawn at the time of endomyocardial biopsy; protein fold change, logistic regression, and pathway analyses were conducted, with protein discovery adjusted for a 5% false discovery rate. Among 104 adult heart transplant patients (31% female sex, 53% Black race, median age 52 y), 74 had no rejection, 18 developed acute cellular rejection (ACR), and 12 developed antibody-mediated rejection (AMR). Differential expression was found in 2 proteins during ACR (inflammatory proteins CXCL10 and CD5) and 73 proteins during AMR. The most abundant AMR proteins were the heart failure biomarkers N-terminal pro-B-type natriuretic peptide and suppression of tumorigenicity 2. In univariate logistic regression, odds of identifying ACR on endomyocardial biopsy increased with doubling of CXCL10 (odds ratio [OR] 2.2 [95% confidence interval (CI), 1.3-3.6]) and CD5 (OR 4.7 [95% CI, 1.7-12.9]) concentrations, and odds of AMR increased with doubling of N-terminal pro-B-type natriuretic peptide (OR 13.0 [95% CI, 2.7-62.7) and suppression of tumorigenicity 2 (OR 4.8 [95% CI, 2.1-10.7]) concentrations. After multivariable analysis with clinical covariates, these proteins showed similar odds of ACR or AMR on biopsy. Pathway analysis identified T cell-receptor signaling and cell differentiation as key pathways in ACR and cardiovascular disease and cell turnover in AMR. Proteomic analysis reveals unique biomarkers and biological pathway expression in ACR and AMR. Cardiac injury-associated biomarkers were more pronounced in AMR, whereas inflammatory biomarkers were more pronounced in ACR. Proteomic analysis may provide insights into rejection pathophysiology, detection, and therapy.

Telehealth in Family Medicine Clerkships After Return of In-Person Care: A CERA Study

Introduction: The COVID-19 pandemic encouraged widespread implementation of telemedicine. With the increased normalization of telemedicine in clinical practice, the authors sought to characterize telemedicine training during family medicine clerkships after the return to in-person care. Methods: Data were collected as part of the 2023 Council of Academic Family Medicine’s Educational Research Alliance (CERA) survey of family medicine clerkship directors (CDs). Along with baseline demographics about the clerkship and themselves, CDs answered which Association of American Medical Colleges (AAMC) telehealth competencies were taught during family medicine clerkships and indicated challenges related to involving medical students in telemedicine visits. Results: More than half of the responding family medicine clerkships (57.3%) did not teach any of the AAMC telehealth core competencies and only 4.3% taught all six competencies. The three most commonly taught competencies during the clerkship included communication via telehealth (32.2%), patient safety and appropriate use of telehealth (27.1%), and technology for telehealth (17.7%). Most family medicine clerkships (68.0%) identified at least one challenge of the three possible perceived challenges with “limited site resources” as the most reported barrier. There was no significant difference in telemedicine training from CD based on type of medical school (P=.73), gender (P=.82), being a CD for 5 years or less (P=.41), or self-identification as an underrepresented minority in medicine (P=.19). Conclusions: Of those CDs who responded, many still do not teach the AAMC telehealth core competencies within their family medicine clerkship. The majority reported limited site resources as a barrier to telehealth education.

The Midlands Liver Research Alliance - A partnership to optimise obesity-related liver disease research: targeting areas of high incidence and underserved communities

The Midlands Liver Research Alliance - A partnership to optimise obesity-related liver disease research: targeting areas of high incidence and underserved communities

Role of NEP 2020 in Encouraging Global Partnerships in Indian Higher Education

The Government of India's National Education Policy (NEP) 2020 places a strong emphasis on internationalization and foreign collaborations in higher education. NEP 2020 is a powerful instrument for building worldwide collaborations because of its innovative approach to internationalization. The policy encourages cooperation through initiatives including combined degree programs, academic mobility, and research alliances with respectable foreign universities. It facilitates the process for foreign universities to establish campuses in India and encourages Indian institutions to increase their global presence. By promoting credit transfer programs and reciprocal qualification recognition, NEP 2020 aligns Indian education with global standards. This research examines the ways in which NEP 2020 has enabled these collaborations, pinpoints obstacles, and assesses their consequences for higher education in India. Both quantitative and qualitative techniques were used to assess a sample of 117 academic institution respondents. To guarantee thorough results, statistical testing and hypothesis validation were carried out. This study also examined the effects of NEP 2020 on international partnerships in Indian higher education, assessed the results, and pinpointed solutions to problems. The results advance knowledge of how policy frameworks improve HEIs' internationalization and competitiveness in the global market.

A study on the health service demands and influence factors among elderly people based on a community survey in Western China†

Abstract Objective To investigate the health service demands and to analyze influencing factors among elderly people based on a community survey in Guilin, China. Methods A random sampling was used to investigate 366 elderly people in a community using a Health-Care-Needs questionnaire, which was designed by The Western Nursing Alliance research team in China. This survey was used to understand the basic situation, financial condition, health condition, self-care abilities, pension plan, and care services demands of the elderly residing at home. Additionally, this article analyzed the influencing factors contributing to the obtained results. Results The top 3 nursing needs were security needs (1.61 ± 0.45 points), health education needs (1.54 ± 0.57 points), and respect and self-development needs (1.13 ± 0.64 points). Logistic multifactor regression analysis showed that gender, monthly income, lack of exercise, activities of daily living (ADL) scores, methods of medical payment, and pension plan were independent factors affecting elderly nursing needs. Conclusions The home-based health services supply for elders did not meet their needs. Therefore, a comprehensive approach considering multifactors such as gender, income, exercise, self-care ability, medical expense payments, and supporting preferences should be considered to address the complex needs of health care.

Alliance rupture and repair in adolescent psychotherapy: What clinicians can learn from research.

The collaborative relationship between a client and therapist, known as the therapeutic alliance, plays an important part in promoting engagement and symptom improvement in adolescent psychotherapy. However, research indicates that alliance strains, called ruptures, are common among this age group, emphasizing the importance of addressing and resolving them for enhanced engagement and better outcomes. Despite this, there is a dearth of age-specific guidelines for effectively fostering a positive alliance and repairing these ruptures. This review examines existing literature to (a) summarize the current understanding of alliance formation in youth psychotherapy, particularly considering the distinct characteristics of working with adolescents, and (b) provide evidence-based recommendations to assist youth therapists in building strong alliances and effectively addressing alliance ruptures with this age group. Existing evidence indicates that while guidance designed for adult therapy can be beneficial, working with adolescents poses unique challenges. These include resistance to treatment, engagement in risky behaviors, confidentiality issues, and parental involvement, which can strain the therapeutic relationship. This emphasizes the importance for youth therapists to understand the unique challenges and developmental stages adolescents face and to adapt their approach accordingly. By doing so, therapists can effectively address the needs of adolescents, fostering a strong alliance and handling any ruptures that may arise. Despite being a relatively new area of study with its inherent limitations, this review underscores the critical role of alliance research in improving therapy for adolescents and guiding the training of therapists who work with this age group. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Editorial: Occupational therapy and occupational science: the evolving, dynamic and reciprocal research alliance for advancing human occupation knowledge and evidence

Editorial: Occupational therapy and occupational science: the evolving, dynamic and reciprocal research alliance for advancing human occupation knowledge and evidence

Balancing High Clinical Volumes and Non-RVU-generating Activities in Radiology, Part I: The Current Landscape

The Radiology Research Alliance (RRA) of the Association of Academic Radiology (AAR) convenes task forces to study trends that will shape the future of radiology. This article presents the findings of the AAR-RRA Task Force on Balancing High Clinical Volumes and Non-RVU-Generating Activities, which set out to analyze and underscore the full value of academic radiologists’ contributions beyond RVU-generating clinical work. The Task Force’s efforts are detailed in a two-part report. This first part describes the current landscape, while the second part focuses on future directions for academic radiology departments aiming to achieve a more optimal balance between high clinical volumes and non-RVU-generating activities.

Establishing a Multifaceted Comprehensive Maternity Cohort Facilitates Understanding of How Environmental Exposures Impact Perinatal Health.

China's "three-child policy", implemented in response to population aging, has made the protection of maternal and infant health an urgent priority. In this environmental and medical big-data era, the Zhejiang Environmental and Birth Health Research Alliance (ZEBRA) maternity cohort was established with the aim of identifying risk factors for perinatal morbidity and mortality from the perspectives of both observational epidemiology and experimental etiology. Compared with conventional birth cohorts, the inclusion of a maternity cohort allows greater scope for research and places an emphasis on maternal health. In particular, it allows us to focus on pregnant women with a history of pregnancy-related illnesses and those planning to have a second or third child. There are currently many pressing issues in perinatal health, including the risk associations between exogenous together with endogenous factors and the occurrence of perinatal abnormalities, pregnancy complications, and adverse pregnancy outcomes. It is crucial to explore the interaction between environmental exposures and genetic factors affecting perinatal health if we are to improve it. It is also worthwhile to assess the feasibility of the early stage prediction of major perinatal abnormalities. We hope to study this in the ZEBRA cohort and also seek nationwide and international collaborations to establish a multicenter cohort consortium, with the ultimate goal of contributing epidemiological evidence to literature and providing evidence-based insights for global maternal and child healthcare.

What are Juvenile-onset systemic sclerosis providers thoughts, experiences, and reasons for autologous stem cell transplant? Result of a multinational survey.

Juvenile-onset systemic sclerosis (jSSc) is a rare and life-threatening disease with no formal studies evaluating the indications for, access to, or benefits of autologous stem cell transplantation (ASCT). As a first step toward understanding pediatric jSSc specialist thoughts and experiences with ASCT, we conducted a multinational survey. An electronic survey was developed and distributed in November 2023 to members of the Pediatric Rheumatology European Society (PRES) and/or Childhood Arthritis and Rheumatology Research Alliance (CARRA) pediatric scleroderma workgroups. Twenty-nine (69%) jSSc specialists completed the survey. All participants have considered or would consider ASCT referral for a jSSc patient. Nearly all respondents indicated disease-modifying anti-rheumatic drugs (DMARDs) should be trialed prior to ASCT referral, with most indicating two to four DMARDs. The most common reasons selected for referral were rapidly progressive disease (despite DMARD) (90%), followed by severe disease status (83%), and significant impact on quality of life (83%). All respondents selected pulmonary disease as an indication for referral, followed by cardiac (93%), gastrointestinal (72%), and skin disease (66%). While pulmonary and cardiac involvement were considered individually sufficient for referral for ASCT, only a minority considered musculoskeletal involvement (28%) sufficient on its own. This survey is the first explore thoughts and experience with ASCT for jSSc. Results indicate pediatric rheumatologists were aware of and would consider ASCT for their patients. Our results indicate there is likely some variability in clinical practice regarding who is referred for ASCT, and further research is needed to guide development of evidence-based clinical care guidelines.

Belantamab Mafodotin Plus Cyclophosphamide and Dexamethasone for Patients with Relapsed or Refractory Multiple Myeloma: Interim Results from the UK Myeloma Research Alliance Prommise Clinical Trial

Belantamab Mafodotin Plus Cyclophosphamide and Dexamethasone for Patients with Relapsed or Refractory Multiple Myeloma: Interim Results from the UK Myeloma Research Alliance Prommise Clinical Trial

Developing the WECARE cross-national research alliance for investigating early childhood educators’ wellbeing

PurposeThis paper describes the development of the WECARE cross-national research alliance for investigating early childhood educators’ wellbeing, and details the experiences of some of WECARE’s 17 members.Design/methodology/approachThe paper explores and situates the WECARE team’s experiences within extant literature on cross-national and collaborative research groupings alongside a strongly practical focus.FindingsThe study’s findings included effects of member mindsets and motivations, differentiated benefits and challenges of membership, cultural sensitivity, research capacity-building, leadership, communication, data security and planning.Originality/valueCross-national research is seen as an important part of academic researchers’ activities. Yet, little has been written about how cross-national research groups form and operate, and what benefits and challenges their members experience.

Impact of State Abortion Policies on Family Medicine Practice and Training After Dobbs v Jackson Women's Health Organization.

The Dobbs v Jackson Women's Health Organization (Dobbs) Supreme Court decision revoked the constitutional right to abortion. Now, restrictive state abortion laws may contribute to the shortage and strain already felt in primary care practice, especially related to the provision of reproductive health care. The purpose of this study is to evaluate perceived impacts of state abortion legislation on family medicine clinicians' practice and medical education regarding reproductive health care. Ten questions were added to the 2022 Council of Academic Family Medicine Educational Research Alliance general membership survey to evaluate impact on relevant themes in reproductive health care and training after the Dobbs decision. Responses were categorized by severity of restriction of state abortion policies. Of 1,196 respondents, 49.7% reported employment in states with very restrictive or restrictive abortion policies. The 991 respondents with clinical responsibilities reported significant (P <.05) changes in their counseling practices, clinical decision making, worry of legal risks, and trust in patients' self-reported reproductive medical history, compared with peers in protective states. Perceived patient trust toward clinicians remained unchanged. Almost one-half of clinical respondents reported an absence of reproductive health care guidance or recommendations. Restrictive abortion policies significantly (P <.05) reduced the desirability and confidence in resident training programs. Reported changes to clinical activities and training, coming early after the Dobbs decision, affect our current and future workforce and therefore, our patients. Future studies are needed to document continued impact of state restrictions and inform policy to support family medicine clinicians in reproductive health practice and education.

Preface

Abstract This Special Issue presents selected papers from EERA DeepWind conference, 17 – 19 January. This was the 21th Deep Sea Offshore Wind R&amp;D Conference. The conference was hosted by SINTEF and NTNU and organized in cooperation with NorthWind and the European Energy Research Alliance (EERA) joint programme on wind energy. A total of 50 papers are included addressing the research topics of the conference: List of Acknowledgements, Conference chairs and guest editors are available in this pdf.

Impact of ChatGPT and Large Language Models on Radiology Education: Association of Academic Radiology—Radiology Research Alliance Task Force White Paper

Generative artificial intelligence (AI), including large language models (LLMs), holds immense potential to enhance healthcare, medical education, and health research. Recognizing the transformative opportunities and potential risks afforded by LLMs, the Association of Academic Radiology – Radiology Research Alliance convened a task force to explore the promise and pitfalls of using LLMs such as ChatGPT in radiology. This white paper explores the impact of LLMs on radiology education, highlighting their potential to enrich curriculum development, teaching and learning, and learner assessment. Despite these advantages, the implementation of LLMs presents challenges, including limits on accuracy and transparency, the risk of misinformation, data privacy issues, and potential biases, which must be carefully considered. We provide recommendations for the successful integration of LLMs and LLM-based educational tools into radiology education programs, emphasizing assessment of the technological readiness of LLMs for specific use cases, structured planning, regular evaluation, faculty development, increased training opportunities, academic-industry collaboration, and research on best practices for employing LLMs in education.

Evidence-Based Medicine Culture, Curriculum, and Program Outcomes: A CERA Study.

Limited faculty development is a barrier to advancing evidence-based medicine (EBM) education. This study sought to describe program director perception of EBM culture in family medicine residency training and to assess the association among structured faculty roles, EBM curricula, and specific resident outcomes including publications in EBM. Members of the Society of Teachers of Family Medicine EBM collaborative drafted survey questions based on a literature review. The questions were electronically distributed in May 2023 to all US family medicine residency program directors who had not previously opted out by the Council of Academic Family Medicine Educational Research Alliance within its study of family medicine program directors. We analyzed results using descriptive and comparative statistics. The overall response rate was 44.7% (309/691). We found that 260/281 (92%) of program directors reported an EBM curriculum of some kind, and 253/281 (90%) of program directors agreed/strongly agreed that EBM was accepted by residents. Of the respondents, 72/281 (25.6%) reported that no specific faculty member was responsible for their EBM curriculum. Most program directors reported that less than 50% of residents will leave their programs with the ability to detect an error in original research (23.8%; 67/281), detect an important omission in an UpToDate article (16%; 45/281), or author a narrative review for American Family Physician (10%; 28/281). Program directors reported strong acceptance of EBM among residents and a high prevalence of a formal curriculum. However, many lacked a specific faculty lead, and few reported that residents had strong EBM skills. This study identified gaps in residency training to support future EBM-skilled family physicians as well as concerns about pathways for the development of future EBM faculty.