Research Partnerships Research Articles

Supporting children and families with opportunity gaps: educators’ perspectives of a summer kindergarten transition program

ABSTRACT Effective transitions to kindergarten engage families and ease children into new environments. Countdown to Kindergarten (CTK), a program in a southeastern U.S. state that serves more than 1,000 children each year and is grounded in Bronfenbrenner’s ecological systems theory, partners kindergarten teachers and families to facilitate effective transitions for those who often experience opportunity gaps. Research partners surveyed 238 CTK educators (98% of participating educators). Educators indicated that CTK had a positive impact on increasing family awareness of school expectations, promoting smooth transitions, and developing positive relationships between teachers and families. The perceived quality of CTK and parent investment in CTK significantly predicted educators’ belief that CTK exceeded its goals of enhancing connections between the blended systems in which children interact. The model provides curricular approaches, activities, and materials for six sessions prior to kindergarten entry that can be replicated to better serve children and families in need.

Teacher candidates as student partners in decoding the disciplines research

This study examines the role of secondary teacher candidates as student partners in research into undergraduate students’ historical cognition while contextualizing documents. It highlights the unique role of teacher candidates as near-peer interviewers and change agents within higher education and secondary curricula. Through using decoding the disciplines methodology to solicit student voice in near-peer interviews, teacher candidates identified areas for curricular change in teaching contextualization in university history courses. The involvement of teacher candidates extended beyond the university classroom and informed their future work in secondary education. Decoding experiences in university courses provided teacher candidates with insights into supporting secondary pupils’ abilities to contextualize historical sources. This research demonstrates the potential of teacher candidates as near-peer interviewers and curricular change agents in secondary and higher education. Collaborative partnerships between teacher candidates and faculty can lead to meaningful curricular changes and effective teaching practices in higher education and secondary education contexts.

Students as co-producers

To engage students with academic research is recognised as a high-impact activity that supports the development of valuable critical thinking skills. Various approaches have been developed to promote student research both in and outside the curriculum. By incorporating the perspectives of both students and academics, this qualitative study evaluates the extent to which a research partnership is formed through an institutional research scheme called the Junior Research Associate. Our findings indicate that it is critical to move beyond the entrenched academic hierarchies of supervisor/supervisee to develop a negotiated research relationship. Challenges identified include the short timeframe to establish the conditions for successful partnership and differential expectations of partners at the outset of the scheme. It is also important to safeguard against such initiatives being instrumentalised by academics seeking to further their personal research agenda. The findings help to inform strategies to scale up such initiatives.

Exploring Biosensors’ Scientific Production and Research Patterns: A Bibliometric Analysis

More sustainable biosensor production is growing in importance, allowing for the development of technological solutions for several industries, such as those in the health, chemical, and food sectors. Tracking the latest advancements in biosensors’ scientific production is fundamental to determining the opportunities for the future of the biosensing field. This article aims to map scientific production in the biosensors field by running a bibliometric analysis of journal articles registered in the Web of Science database under biosensor-related vital concepts. The key concepts were selected by researchers and biosensor technology developers working on the BioAssembler Horizon project. The findings lead to identifying the scientific and technological knowledge base on biosensing devices and tracking the main scientific organisations developing this technology throughout the COVID-19 period (2019–2023). The institutional origin of the publications characterised the global distribution of related knowledge competencies and research partnerships. These results are discussed, shedding light on the scientific, economic, political, and structural factors that contribute to the formation of a scientific knowledge-based focus on the performance and design of these sensors. Moreover, the lack of scientific ties between the three axes of organisations producing expertise in this area (China, USA, and Russia) points towards the need to find synergies through new mechanisms of co-authorship and collaboration.

A guide to successful management of collaborative partnerships in quantitative research: An illustration of the science of team science

Data‐intensive research continues to expand with the goal of improving healthcare delivery, clinical decision‐making, and patient outcomes. Quantitative scientists, such as biostatisticians, epidemiologists, and informaticists, are tasked with turning data into health knowledge. In academic health centres, quantitative scientists are critical to the missions of biomedical discovery and improvement of health. Many academic health centres have developed centralized Quantitative Science Units which foster dual goals of professional development of quantitative scientists and producing high quality, reproducible domain research. Such units then develop teams of quantitative scientists who can collaborate with researchers. However, existing literature does not provide guidance on how such teams are formed or how to manage and sustain them. Leaders of Quantitative Science Units across six institutions formed a working group to examine common practices and tools that can serve as best practices for Quantitative Science Units that wish to achieve these dual goals through building long‐term partnerships with researchers. The results of this working group are presented to provide tools and guidance for Quantitative Science Units challenged with developing, managing, and evaluating Quantitative Science Teams. This guidance aims to help Quantitative Science Units effectively participate in and enhance the research that is conducted throughout the academic health centre—shaping their resources to fit evolving research needs.

Researching COVID to enhance recovery (RECOVER) pediatric study protocol: Rationale, objectives and design.

The prevalence, pathophysiology, and long-term outcomes of COVID-19 (post-acute sequelae of SARS-CoV-2 [PASC] or "Long COVID") in children and young adults remain unknown. Studies must address the urgent need to define PASC, its mechanisms, and potential treatment targets in children and young adults. We describe the protocol for the Pediatric Observational Cohort Study of the NIH's REsearching COVID to Enhance Recovery (RECOVER) Initiative. RECOVER-Pediatrics is an observational meta-cohort study of caregiver-child pairs (birth through 17 years) and young adults (18 through 25 years), recruited from more than 100 sites across the US. This report focuses on two of four cohorts that comprise RECOVER-Pediatrics: 1) a de novo RECOVER prospective cohort of children and young adults with and without previous or current infection; and 2) an extant cohort derived from the Adolescent Brain Cognitive Development (ABCD) study (n = 10,000). The de novo cohort incorporates three tiers of data collection: 1) remote baseline assessments (Tier 1, n = 6000); 2) longitudinal follow-up for up to 4 years (Tier 2, n = 6000); and 3) a subset of participants, primarily the most severely affected by PASC, who will undergo deep phenotyping to explore PASC pathophysiology (Tier 3, n = 600). Youth enrolled in the ABCD study participate in Tier 1. The pediatric protocol was developed as a collaborative partnership of investigators, patients, researchers, clinicians, community partners, and federal partners, intentionally promoting inclusivity and diversity. The protocol is adaptive to facilitate responses to emerging science. RECOVER-Pediatrics seeks to characterize the clinical course, underlying mechanisms, and long-term effects of PASC from birth through 25 years old. RECOVER-Pediatrics is designed to elucidate the epidemiology, four-year clinical course, and sociodemographic correlates of pediatric PASC. The data and biosamples will allow examination of mechanistic hypotheses and biomarkers, thus providing insights into potential therapeutic interventions. Clinical Trial Registration: http://www.clinicaltrials.gov. Unique identifier: NCT05172011.

“I Want to Say the Right Thing”: Developing Translingual Literacy Practices Through Early Care Educator and University Researcher Partnerships

“I Want to Say the Right Thing”: Developing Translingual Literacy Practices Through Early Care Educator and University Researcher Partnerships

Research ethics in social science research during health pandemics: what can we learn from COVID-19 experiences?

The COVID-19 pandemic posed many ethical and practical challenges for academic research. Some of these have been documented, particularly in relation to health research, but less attention has been paid to the dilemmas encountered by educational and social science research. Given that pandemics are predicted to be more frequent, it is vital to understand how to continue crucial research in schools and other learning communities. This article therefore focuses specifically on research ethics in educational and social science during the pandemic of 2020–2022. The research involved interviews and workshops with University College London (UCL) academics, professional staff and graduate students and encompassed those involved in reviewing ethics applications, researchers dealing with ethics in projects that continued despite disruptions caused by COVID-19, and successful research projects specifically designed to study the effects of COVID-19 in various contexts. The article discusses some of the crucial knowledge and practical experiences that were accumulated. The operational and epistemological lessons learned from this particular institution may have wider relevance to research ethics processes in higher education environments where academics and students are grappling with post-COVID-19 ethical dilemmas and inform broader debates about how research institutions can build institutional knowledge to improve practices of ethics review at the times of health emergencies in future. Our evidence points to the significance of inter- and multidisciplinary, collaborative approaches that flatten institutional hierarchies and to the crucial role played by professional staff. In addition, we argue that ethics review processes must be underpinned by critical debates about wider issues of unequal power relationships between research partners, the nature of knowledge production, ownership and utilisation. To enhance equity and epistemic justice in research practices, ethics education should be an ongoing integral part of research ethics within research institutions.

Abstract PO5-05-10: Analysis of Trends in Funding of Metastatic Breast Cancer Research

Abstract Introduction To inform funding strategies for research in metastatic breast cancer (MBC), knowledge of the current research landscape and identification of potential gap areas requiring additional research are essential. In 2014, the Metastatic Breast Cancer Alliance (MBCA) published an analysis that showed that between 2000 and 2013, only 7% of all funds for breast cancer research were devoted to metastasis. As more people are living with MBC, addressing research priorities for those living with the disease is important, as is understanding gaps in the current funding landscape of MBC research to appropriately target investment. Methods A collaborative effort between funders and patients was undertaken to analyze breast cancer projects funded between 2014 and 2020 from the International Cancer Research Partnership database, the Health Resource Alliance database, and MBCA members, representing grants from 83 non-profit organizations worldwide. Project titles, abstracts, and classifications of these grants were extracted from these databases. Next, to identify research projects in the databases that are related to metastasis, a classification tool that uses a machine learning algorithm was built, trained on manually coded grants from the 2000-2013 analysis, and validated by expert coders. Projects were then coded according to a pre-established metastasis classification policy to categories such as type of research (e.g., treatment), genes or proteins studied, site of metastasis, breast cancer subtype, and patient priority questions. In terms of the latter, MBCA members living with MBC were surveyed about research priorities. Member advocates ranked survey questions according to highest patient priority, and these were converted to language that could be queried with the tool. Results Investment in MBC research nearly doubled from 2014 to 2020. Research into understanding and overcoming treatment resistance, which was the highest patient priority question, increased from 15% in 2014 to 26% of the MBC portfolio in 2020; this was a statistically significant increase above the rate of inflation. In terms of treatment resistance according to subtype, the highest number of projects focused on triple-negative MBC (>300). By contrast, < 20 projects were focused on overcoming treatment resistance in metastatic invasive lobular breast cancer. Of the six categories evaluated (e.g. biology and detection/diagnosis/prognosis), the largest increase in investment was for treatments. Discussion The coding tool allows for ongoing complex queries such as identification of funded research relevant to areas identified as important by MBC advocates (Table) and provides a funders’ ‘dashboard’ to identify gap areas in need of further research funding. This collaborative effort between funders and patient advocates, and the resulting current and future analyses, can be used to focus advocacy efforts to drive research funding of priorities and understudied areas of MBC. Despite the increase in funding, the investment in metastatic research–the primary cause of death from breast cancer–remains insufficient. Table. Research Priorities of MBC Patient Advocates Citation Format: Margaret Flowers, Teri Pollastro, Kari Wojtanik, Katherine McKenzie, Kimberly Badovinac, Medha Deoras-Sutliff, Lynne Davies. Analysis of Trends in Funding of Metastatic Breast Cancer Research [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-05-10.

Abstract PO1-17-06: Driving diversity in research participation with ShareForCures™, a patient-centered, nationwide breast cancer research registry to improve outcomes

Abstract Background The lack of diversity in research and small and siloed datasets have led to a lack of real-world evidence, limiting our ability to practice precision medicine and optimize treatments and care for all breast cancer patients. Susan G. Komen,® a breast cancer advocacy organization and the largest non-profit breast cancer funder outside the U.S. government, launched ShareForCures™ (SFC), a secure, patient-centered research registry. The registry aims to engage breast cancer survivors from diverse backgrounds as research partners to facilitate sharing of their data to drive innovative breast cancer research and improve outcomes. SFC is IRB-approved and open to any adult living in the U.S. and diagnosed with breast cancer. SFC is designed to be easy to join and accessible online. Participants provide survey information about their diagnosis, quality of life, lifestyle, family history, etc. Some of them will be asked to provide a saliva sample, and their medical records will be retrieved. Methods Patient advocates have driven every aspect of the development of SFC, from serving on its governance council to participating in focus groups and beta-testing the platform build. Most important to the success of the registry was to ensure we worked with community partners to conduct breast cancer survivor focus groups and to solicit views and expectations about patient-centered research engagement. Those focus groups were conducted in 2020 and 2021 in-person (N=4) and virtually (N=8) across the U.S., with three conducted in Spanish. The findings that emerged from the focus groups informed the establishment of SFC, from governance and technology implementation to platform features and processes. For feedback on pre-enrollment information, we invited 432 diverse breast cancer survivors to participate in an audience testing of two versions of a SFC landing page, a flyer, and a social media post. One version was designed to be more technical and the other more inspiring/motivational. Finally, we pilot tested SFC with 56 breast cancer survivors. Those who joined provided feedback through individual debriefing sessions about the onboarding process, consent, the questionnaire (“About You”) and the SFC platform. Results Four main themes emerged from the focus groups (N=64 participants): tailor communications to specific groups of participants, create an environment of trust and transparency, address concerns about data privacy and security, and share news and results. Audience testing on SFC materials revealed the majority liked positive personal messaging, although technical messaging highlighting the science, research, and data was also favorably reviewed. Participants ranked privacy and data security as priority concerns. Of the 56 breast cancer survivors invited to participate in the pilot testing of SFC, 31 fully onboarded, three started but did not complete onboarding, and six declined. To fully onboard, participants had to accept the informed consent and medical records release forms and complete the “About You” questionnaire. They indicated the process and online platform were easy, and the dashboard was an important feature for participants to stay engaged. They also confirmed focus group emphasis on clarity regarding SFC research goals and importance of sharing results. Conclusions All individuals who provided feedback expressed interest in sharing their experiences, inspiring others’ experiences, and accelerating research. They understood that this research may not benefit them directly but that it could benefit others. The results indicate that people are willing to participate in research if asked. Komen’s patient-centered approach of involving patients at all steps of developing SFC fosters trust, transparency and engagement that will enhance SFC’s impact. Citation Format: Jerome Jourquin, Stephanie McCoy, Barbara Segarra, Emily Marks, Carlita Proctor McIlwain, Brady Kazar, Melissa Troester, Kimberly Sabelko, Melissa Bondy. Driving diversity in research participation with ShareForCures™, a patient-centered, nationwide breast cancer research registry to improve outcomes [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO1-17-06.

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

BackgroundPatient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and...

Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol

IntroductionPatient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group...

Simulation and industry partnership in vascular surgery education

BackgroundSimulation training improves resident open and endovascular technique and increases efficiency in the OR., meeting costs and allocating time to curriculum development are obstacles for the leadership of surgical residencies. In this paper, we provide a narrative review of the types of simulation and the role industry has in simulation. We also explain how our institution utilized medical device sponsorship in a cost-efficient, non-biased way. MethodsVascular surgery trainees and surgeons were invited to two local, in-person simulation events, focusing on the management of aortic aneurysms and peripheral vascular disease. Pre- and post-surveys were sent to participants, and the results were analyzed with descriptive statistics. Survey score means were compared via paired t-test with significance set at P<0.05. ResultsBenchtop anastomotic models, animal/cadaveric models, and virtual reality have been adopted in many surgical programs and can each provide practice to different levels of skill. While industry is supportive of simulation curriculums, little is published regarding the role it plays and ways to reduce conflict of interest. At our local simulation events, trainees showed significant improvement in confidence ratings. ConclusionsIndustry sponsorship has been able to support many educational endeavors. In our experience, we attempted to reduce conflict of interest by focusing on device company participation and nonpartisan, physician-lead didactics. There is a great need for future research in surgical education and industry partnership.

Association between maternal mental health-related hospitalisation in the 5 years prior to or during pregnancy and adverse birth outcomes: a population-based retrospective cohort data linkage study in the Northern Territory of Australia

Mental health conditions prior to or during pregnancy that are not addressed can have adverse consequences for pregnancy and birth outcomes. This study aimed to determine the extent to which women's mental health-related hospitalisation (MHrH) prior to or during pregnancy was associated with a risk of adverse birth outcomes. We linked the perinatal data register for all births in the Northern Territory, Australia, from the year 1999 to 2017, to hospital admissions records to create a cohort of births to women aged 15-44 years with and without MHrH prior to or during pregnancy. We used Modified Poisson Regression and Latent Class Analysis to assess the association between maternal MHrH and adverse birth outcomes (i.e., stillbirth, preterm birth, low birth weight, and short birth length). We explored a mediation effect of covariates on theoretical causal paths. We calculated the adjusted Population Attributable Fraction (PAF) and Preventive Fractions for the Population (PFP) for valid associations. From 72,518 births, 70,425 births (36.4% for Aboriginal women) were included in the analysis. The Latent Class Analys identified two classes: high (membership probability of 10.5%) and low adverse birth outcomes. Births to Aboriginal women with MHrH were around two times more likely to be in the class of high adverse birth outcomes. MHrH prior to or during pregnancy increased the risk of all adverse birth outcomes in both populations with risk ranging from 1.19 (95% CI: 1.05, 1.35) to 7.89 (1.17, 53.37). Eight or more antenatal care visits and intrauterine growth restriction mostly played a significant mediation role between maternal MHrH and adverse birth outcomes with mediation effects ranging from 1.04 (1.01, 1.08) to 1.39 (1.14, 1.69). MHrH had a low to high population impact with a PAF ranging from 16.1% (5.1%, 25.7%) to 87.3% (14.3%, 98.1%). Eight or above antenatal care visits avert extra adverse birth outcomes that range from 723 (332-765) stillbirths to 3003 (1972-4434) preterm births. Maternal MHrH is a modifiable risk factor that explained a low to moderate risk of adverse birth outcomes in the Northern Territory. The knowledge highlights the need for the development and implementation of preconception mental health care into routine health services. The Child and Youth Development Research Partnership (CYDRP) data repository is supported by a grant from the Northern Territory Government.

Digital Health Education for the Future: The SaNuRN (Santé Numérique Rouen-Nice) Consortium's Journey.

SaNuRN is a five-year project by the University of Rouen Normandy (URN) and the Côte d’Azur University (CAU) consortium to optimize digital health education for medical and paramedical students, professionals, and administrators. The project includes a skills framework, training modules, and teaching resources. In 2027, SaNuRN is expected to train a significant portion of the 400,000 health and paramedical professions students at the French national level. Our purpose is to give a synopsis of the SaNuRN initiative, emphasizing its novel educational methods and how they will enhance the delivery of digital health education. Our goals include showcasing SaNuRN as a comprehensive program consisting of a proficiency framework, instructional modules, and educational materials and explaining how SaNuRN is implemented in the participating academic institutions. SaNuRN is a project aimed at educating and training health-related and paramedics students in digital health. The project results from a cooperative effort between URN and CAU, covering four French departments. The project is based on the French National Referential on Digital Health (FNRDH), which defines the skills and competencies to be acquired and validated by every student in the health, paramedical, and social professions curricula. The SaNuRN team is currently adapting the existing URN and CAU syllabi to FNRDH and developing short-duration video capsules of 20 to 30 minutes to teach all the relevant material. The project aims to ensure that the largest student population earns the necessary skills, and it has developed a two-tier system involving facilitators who will enable the efficient expansion of the project’s educational outreach and support the students in learning the needed material efficiently. With a focus on real-world scenarios and innovative teaching activities integrating telemedicine devices and virtual professionals, SaNuRN is committed to enabling continuous learning for healthcare professionals in clinical practice. The SaNuRN team introduced new ways of evaluating healthcare professionals by shifting from a knowledge-based to a competencies-based evaluation, aligning with the Miller teaching pyramid and using the Objective Structured Clinical Examination and Script Concordance Test in digital health education. Drawing on the expertise of URN, CAU, and their public health and digital research laboratories and partners, the SaNuRN project represents a platform for continuous innovation, including telemedicine training and living labs with virtual and interactive professional activities. The SaNuRN project provides a comprehensive, personalized 30-hour training package for health and paramedical students, addressing all 70 FNRDH competencies. The program is enhanced using AI and NLP to create virtual patients and professionals for digital healthcare simulation. SaNuRN teaching materials are open-access. The project collaborates with academic institutions worldwide to develop educational material in digital health in English and multilingual formats. SaNuRN offers a practical and persuasive training approach to meet the current digital health education requirements.

Research status and global trends of late-life depression from 2004 to 2023: bibliometric analysis

BackgroundGlobal research hotspots and future research trends in the neurobiological mechanisms of late-life depression (LLD) as well as its diagnosis and treatment are not yet clear.ObjectivesThis study profiled the current state of global research on LLD and predicted future research trends in the field.MethodsLiterature with the subject term LLD was retrieved from the Web of Science Core Collection, and CiteSpace software was used to perform econometric and co-occurrence analyses. The results were visualized using CiteSpace, VOSviewer, and other software packages.ResultsIn total, 10,570 publications were included in the analysis. Publications on LLD have shown an increasing trend since 2004. The United States and the University of California had the highest number of publications, followed consecutively by China and England, making these countries and institutions the most influential in the field. Reynolds, Charles F. was the author with the most publications. The International Journal of Geriatric Psychiatry was the journal with the most articles and citations. According to the co-occurrence analysis and keyword/citation burst analysis, cognitive impairment, brain network dysfunction, vascular disease, and treatment of LLD were research hotspots.ConclusionLate-life depression has attracted increasing attention from researchers, with the number of publications increasing annually. However, many questions remain unaddressed in this field, such as the relationship between LLD and cognitive impairment and dementia, or the impact of vascular factors and brain network dysfunction on LLD. Additionally, the treatment of patients with LLD is currently a clinical challenge. The results of this study will help researchers find suitable research partners and journals, as well as predict future hotspots.

Fidelity in Academic Global Surgery and Research: Incorporating Trustworthiness in the Development of Research Partnerships, Infrastructure, and Policy.

Academic global surgery consists of collaborative partnerships that address surgical inequities through research, training, education, advocacy, and diplomacy. It has been characterized by increased scholastic production through global surgery publications, dedicated global surgery sessions within scientific conferences, global surgery-specific research grants, database development to support global surgery research, global surgery research fellowships, and global surgery-based academic promotion paradigms. The increased emphasis on global surgery research has been accompanied by multiple ethical challenges. This article reviews critical ethical dilemmas presented by global surgery research efforts and proposes interventions on the partnership, infrastructural, and policy levels to enhance fidelity within research partnerships.

Lessons learned from a multi-data source research collaboration: The mirabegron post-authorization safety study program.

Many factors contribute to developing and conducting a successful multi-data source, non-interventional, post-authorization safety study (NI-PASS) for submission to multiple health authorities. Such studies are often large undertakings; evaluating and sharing lessons learned can provide useful insights to others considering similar studies. We discuss challenges and key methodological and organizational factors that led to the delivery of a successful post-marketing requirement (PMR)/PASS program investigating the risk of cardiovascular and cancer events among users of mirabegron, an oral medication for the treatment of overactive bladder. We provide context and share learnings, including sections on research program collaboration, scientific transparency, organizational approach, mitigation of uncertainty around potential delays, validity of study outcomes, selection of data sources and optimizing patient numbers, choice of comparator groups and enhancing precision of estimates of associations, potential confounding and generalizability of study findings, and interpretation of results. This large PMR/PASS program was a long-term commitment from all parties and benefited from an effective coordinating center and extensive scientific interactions across research partners, scientific advisory board, study sponsor, and health authorities, and delivered useful learnings related to the design and organization of multi-data source NI-PASS.

Patient research partner engagement in OMERACT: Enhancing engagement through the implementation of patient engagement in research tools

ObjectivesThis paper describes the evolution and impact of Patient Research Partners (PRPs) in shaping research within OMERACT and provides a framework to enhance their engagement. This session explored one component of a validated framework to evaluate meaningful patient engagement. It provides insights, identifies opportunities for improvement, and recommends using the Patient Engagement in Research (PEIR) Framework, PEIR Plan Guide (workbook), and PEIRS-22 (scale) to guide and measure PRPs' engagement. MethodsBefore the conference, the team held planning sessions and selected the Feel-Valued component of the PEIR Workbook for exploration. During OMERACT 2023, we discussed this topic using the PEIR Plan Guide in an interactive plenary session. ResultsThe plenary session produced 72 items from 14 breakout tables addressing PEIR Framework themes. ConclusionsThis paper highlights the role and evolution of PRPs in shaping research within OMERACT. It emphasizes enhancing and accurately measuring PRP engagement through the PEIR Framework, PEIR Plan Guide, and PEIRS-22. The insights and methodologies presented aim to fortify future PRP engagement, ensuring it aligns with OMERACT's principles of patient-centred research.

Evaluation of a Digital Dementia Registry's IT Architecture After a Three-Year Period in Practice: digiDEM Bayern.

The project "digiDEM Bayern" aims to set up a registry with long-term follow-up data on people with dementia and their family caregivers. For that purpose an Electronic Data Capture (EDC) system linked with a Participant Management (PM) system has been established. This study evaluates the acceptance and usability of the IT tools supporting all data management processes in order to further improve the system and associated processes. For this purpose we collected the key numbers of the registry, and used the System Usability Scale (SUS) to evaluate the interactions of the data management systems in a wide area. Thirty-six research partners (RP) and six study team (ST) members completed the anonymous online survey. The EDC system overall reached an average SUS score of 73.42 and the PM system of 77.92. The two systems fulfil their required task and, therefore, simplify the work of the RP in the data collection process and of the ST during the data quality checks. Integrating the used systems is therefore recommended for registry studies in other medical areas.