Collaborative pharmacy research across integrated health systems: A purpose and promise for opportunities to study the complete medication-use process.

In an effort to expedite the publication of articles, AJHP is posting manuscripts online as soon as possible after acceptance. Accepted manuscripts have been peer-reviewed and copyedited, but are posted online before technical formatting and author proofing. These manuscripts are not the final version of record and will be replaced with the final article (formatted per AJHP style and proofed by the authors) at a later time.

Strengthening clinical trials in African primary care.

Not applicable.

20 years of BioMalPar: Building a collaborative malaria research network.

In 2004 the first annual BioMalPar meeting was held at EMBL Heidelberg, bringing together researchers from around the world with the goal of building connections between malaria research groups in Europe. Twenty years on it is time to reflect on what was achieved and to look ahead to the future.

Experiences and lessons learned from a patient-engagement service established by a national research consortium in the U.S. Veterans Health Administration.

Introduction: Meaningful engagement of patients in the research process has increased over the past 20 years. Few accounts are available of engagement infrastructure and processes used by large research organizations. The Pain/Opioid Consortium of Research (Consortium) is a U.S. Department of Veterans Affairs (VA) research network that provides infrastructure to accelerate health research and implementation of evidence-based health care. The Consortium's key activities include facilitating Veteran-engaged research and building community between Veterans and VA researchers. This report sought to describe experiences and lessons learned from the first 3 years of a national research engagement service, featuring a Veteran Engagement (VE) Panel, established by the Consortium. Methods: We gathered authors' experiences to describe development and operation of the Consortium's VE Panel. Engagement staff collected program evaluation data about partners (Veterans and researchers), projects about which the VE Panel consulted, and meeting attendance during operation of the engagement service. Results: We created a 12-member VE Panel; all of whom had lived experience with chronic pain, prescription opioid medication use, or opioid use disorder. Engagement staff and VE Panel members implemented an engagement service operational model designed to continuously learn and adapt. The panel consulted on 48 projects spanning the research process. Seventy-eight percent of panel members, on average, attended each monthly meeting. VE Panel members and participating researchers reported high satisfaction with the quality, ease, and outcomes of their engagement service experiences. Conclusions: This work provides an illustrative example of how a national research consortium facilitated Veteran-engaged research and built community between Veterans and VA researchers by developing and operating an ongoing engagement consulting service, featuring a VE Panel. The service, designed as a learning community, relied on skilled engagement staff to cultivate high quality experiences and outcomes for all partners.

Cold Moves: Cryogenics in Indo-German Research Networks.

By unravelling the complexities and dynamics of a collaboration between scientists in India and West Germany to establish a cryogenic network, this paper intends to contribute to our understanding of the transnational movement of research technologies during the Cold War. In 1971, a cryogenic laboratory including a helium and a nitrogen liquefier was set up at the physics department of the Indian Institute of Technology (IIT) Madras as part of the Indo-German partnership at IIT Madras between 1959 and 1974. As a generic research technology with many applications, cryogenics became crucial for a solid state research agenda for semiconductor development. After initial difficulties, Ramaswami Srinivasan at IIT Madras and Gustav Klipping of the Fritz Haber Institute in Berlin built a successful collaboration based on mutual trust and on Indian and German scientists travelling and working in each other's laboratories. If the initial motivation of the Indo-German partnership was informed by the logic of Cold War development policy, Klipping and Srinivasan developed their collaboration into a vibrant cryogenic research network around different actors, instruments, and skills moving between India and the Federal Republic of Germany.

The Promise and Challenges of Practice-Oriented Research: A Commentary on the Special Issue.

At the centre of POR is the concept of collaboration between patients, therapists, agencies, and third-party payers. For this commentary, I review the articles of the special issue with attention to both the opportunities and challenges offered by practice-oriented research (POR). I also reviewed some previous research on practice-research networks and how that research might inform POR. The use of routine outcome monitoring (ROM), artificial intelligence (AI), and program evaluation (PE) models show promise for advancing POR. However, each comes with its challenges. The use of ROM to improve patient outcomes has research support. However, researchers have identified problems with implementing ROM because of low uptake by clinicians and because clinicians may see ROM as a potential intrusion. AI shows promise to improve patient outcomes by potentially providing therapists with immediate and nuanced data to inform interventions and interpersonal stances specific to each patient. However, the scaling up of AI runs the risk of dehumanizing psychological interventions. PE may provide a context for allowing therapists to engage in POR to address real-world processes and outcomes of mental health interventions. However, like ROM PE faces the challenge of trust among clinicians and patients who may be reluctant to participate. Despite these challenges, and because of efforts to nurture and maintain respectful collaborations, articles in this special issue highlight how POR can play a pivotal role in bridging the gap between theory and practice.

Considering the Environmental Impact of Practice-Based Research.

INTRODUCTION: Practice-based research networks (PBRNs) improve primary care by addressing issues that matter to clinicians. Building trust between researchers and care teams is essential to this process, which often requires visiting practices to cultivate relationships and perform research activities. However, in a recent study using practice facilitation to improve the delivery of a preventive service, the COVID-19 pandemic prompted us to convert all planned facilitation from an in-person to virtual format. This eliminated the need to commute by automobile to and from practices across the state, greatly reducing the carbon footprint of the study. METHODS: From practice facilitator field notes that detailed practice locations and number of sessions, we calculated the total number of driving miles averted by virtual facilitation. We then determined metric tons of carbon dioxide we avoided producing using the Environmental Protection Agency Greenhouse Gases Equivalencies Calculator. During post-intervention interviews, we assessed practices' perspectives and experiences with the virtual format. RESULTS: Three practice facilitators provided an average of 3.4 sessions for 64 practices. Virtual facilitation averted 32,574.8 drive miles and prevented the release of 12.7 metric tons of carbon dioxide, an offset equivalent to growing 210 trees for 10 years. Practices reported that virtual facilitation fostered greater engagement and allowed more clinicians and staff to attend sessions. DISCUSSION: Climate change poses a significant threat to the health of people and communities. Given their commitment to improving population health, it may be time for PBRNs to routinely assess their environmental impact and minimize preventable environmental costs.

The critical need to accelerate cerebral palsy research with consumer engagement, global networks, and adaptive designs.

The prevalence of cerebral palsy (CP) varies globally, with higher rates and burden of disease in low- and middle-income countries. CP is a lifelong condition with no cure, presenting diverse challenges such as motor impairment, epilepsy, and mental health disorders. Research progress has been made but more is needed, especially given consumer demands for faster advancements and improvements in the scientific evidence base for interventions. This paper explores three strategies to accelerate CP research: consumer engagement, global clinical trial networks, and adaptive designs. Consumer engagement involving individuals with lived experience enhances research outcomes. Global clinical trial networks provide efficiency through larger and more diverse participant pools. Adaptive designs, unlike traditional randomized controlled trials, allow real-time modifications based on interim analyses, potentially answering complex questions more efficiently. The establishment of a CP Global Clinical Trials Network, integrating consumer engagement, global collaboration, and adaptive designs, marks a paradigm shift. The Network aims to address consumer-set research priorities. While challenges like ethical considerations and capacity building exist, the potential benefits for consumers, clinicians, researchers, and funding bodies are substantial. This paper underscores the urgency of transforming CP research methodologies for quicker translation of novel treatments into clinical practice to improve quality of life for those with CP.

Lessons learned in measuring patient engagement in a Canada-wide childhood disability network.

BACKGROUND: The CHILD-BRIGHT Network, a pan-Canadian childhood disability research Network, is dedicated to patient-oriented research, where numerous stakeholders, including patient-partners, researchers, and clinicians are involved at different levels. The Network is committed to continuously improving the level of engagement and partnerships' impact. Measuring patient engagement is therefore important in reflecting on our practices and enhancing our approaches. We aimed to measure patient engagement longitudinally and explore in greater depth the perceived benefits, barriers and facilitators, and overall satisfaction with patient engagement, from the perspectives of the different stakeholders. METHODS: Patient engagement was measured using online surveys. In a longitudinal study design over a 3-years period (2018-2020) the Community-Based Participatory Research (CBPR) questionnaire was used. To enrich our understanding of patient engagement in Year 3, we employed the Public and Patient Engagement Evaluation Tool (PPEET) in a cross-sectional, convergent parallel mixed-method study design. Descriptive statistics and a thematic-based approach were used for data analysis. RESULTS: The CBPR questionnaire was completed by n = 167 (61.4% response rate), n = 92 (30.2% response rate), and n = 62 (14.2% response rate) Network members in Years 1, 2, and 3, respectively. Ninety-five (n = 95, 21.8% response rate) members completed the PPEET in Year 3. CBPR findings demonstrate a stable and high satisfaction level with patient engagement over time, where 94%, 86%, and 94% of stakeholders indicated that the project is a "true partnership" in Years 1, 2, and 3, respectively. In Years 2 and 3, we noted an improvement in patient-partners' comfort level in sharing their views and perspectives (92% and 91% vs. 74%). An increase in critical reflective trust (i.e., allowing for discussing and resolving mistakes) from Year 1 to 3 was found, both from the perspectives of patient-partners (51-65%) and researchers (48-75%). Using the PPEET, patient engagement factors (i.e., communications and supports for participation, ability to share views and perspectives) and impact were highly rated by most (80-100%) respondents. PPEET's qualitative responses revealed several patient engagement advantages (e.g., increased projects' relevance, enhanced knowledge translation), barriers (e.g., group homogeneity), facilitators (e.g., optimal communication strategies), and solutions to further improve patient engagement (e.g., provide clarity on goals). CONCLUSION: Our 3-years patient engagement evaluation journey demonstrated a consistent and high level of satisfaction with patient engagement within the Network and identified advantages, barriers, facilitators, and potential solutions. Improvements were observed in members' comfort in sharing their views and perspectives, along with an increase in critical reflective trust. These findings underscore the Network's commitment to enhancing patient engagement and provide valuable insights for continued improvement and optimization of collaborative efforts.

The CHILD-BRIGHT Network, a Canadian childhood disability research Network, is dedicated to patient-oriented research. It engages more than 300 diverse stakeholders, including patient-partners, researchers, and healthcare professionals. We conducted a 3-years study aimed to measure patient engagement over time and delve into the perceived benefits, barriers, and facilitators from the perspectives of the different members. We administered the Community-Based Participatory Research (CBPR) questionnaire in Years 1­3 (completed by 167, 92, and 62 members, respectively) and the Public and Patient Engagement Evaluation Tool (PPEET) in Year 3 (completed by 95 members). Through the CBPR, we identified in which research processes were Network members involved (e.g., defining the research question, results dissemination), appraised the partnership between researchers and other stakeholders such as patient-partners, and determined the type of trust in this partnership. The use of the PPEET allowed us to explore patient engagement impact and what factors facilitate and limit patient engagement (e.g., communication and supports). CBPR results showed a consistently high satisfaction level with patient engagement, with increased comfort among patient-partners in expressing their views over time, showcasing positive collaborative dynamics. Most stakeholders reported a "true partnership" in their engagement, indicating widespread belief in equitable relationships. Additionally, critical reflective trust, allowing for discussing and resolving mistakes in collaborative working activities, increased over the years, with the highest endorsement in Year 3, demonstrating growing trust among stakeholders. The PPEET findings showed positive ratings for communication, support, and impact of patient engagement. Its qualitative responses identified advantages (e.g., increased project relevance), barriers (e.g., lack of diversity in members' demographic characteristics), facilitators (e.g., effective communication), and suggested improvements (e.g., ensuring goal clarity). In conclusion, our project showed that the partnership between researchers and patient-partners was beneficial, satisfactory and evolved positively over time. The findings are encouraging provided the breadth of the Network, where hundreds of members are primarily connected virtually. We learned that: (1) It is possible to measure patient engagement in a large Network, both at one point in time and over time, and multiple tools can be used together to get a better picture. (2) Regular evaluations are important to optimize the partnership and its impact. (3) The partnership can be improved and strengthened with time through ongoing collaboration, open communication, and a commitment to address the evolving needs and dynamics of all stakeholders involved.

The development of the Belgian paediatric clinical trial network.

Paediatric clinical trials are critical to ensure that medications prescribed to children are safe and effective. However, evidence-based dosing and labelling of such medications remain limited, and most clinical trials in paediatrics fail. Factors for lack of trial completion include performance at site level (limited patient recruitment, limited site staff experience and lack of infrastructure), the sponsor team (limited paediatric specific expertise in design, uncertainties on robustness of biomarkers or outcome variables) as well as regulatory and administrative burdens. As a result of the growing demand for site support, the Belgian Paediatric Clinical Research Network (BPCRN) established in 2009 has been relaunched in 2018 to improve paediatric clinical trials, with the support of innovative-medicines-initiative 2 (IMI2) pan-European network conect4children (c4c) and the transatlantic network I-ACT for Children (US).This paper highlights the formation of the BPCRN and the practical insights it offers for advancing paediatric clinical trials through national networks. A national network can improve trial quality, safety and efficiency, provide clinical research expertise, identify suitable sites, and help with troubleshooting of common trial issues. The BPCRN's centralized approach has advanced paediatric clinical trials by streamlining communication and standardizing trial conduct. Challenges and opportunities have arisen, including a relaunch in 2018, orphan medicine trials, and network sustainability. Collaboration between network activities, government support, site-level improvements, efficient communication, and interaction with industry are key to achieve lasting transformation in paediatric medicine research.

Hitting the Target: Developing High-quality Evidence for Proton Beam Therapy Through Randomised Controlled Trials.

The National Health Service strategy for the delivery of proton beam therapy (PBT) in the UK provides a unique opportunity to deliver high-quality evidence for PBT through randomised controlled trials (RCTs). We present a summary of three UK PBT RCTs in progress, including consideration of their key design characteristics and outcome assessments, to inform and support future PBT trial development. The first three UK multicentre phase III PBT RCTs (TORPEdO, PARABLE and APPROACH), will compare PBT with photon radiotherapy for oropharyngeal squamous cell carcinoma, breast cancer and oligodendroglioma, respectively. All three studies were designed by multidisciplinary teams, which combined expertise from clinicians, clinical trialists and scientists with strong patient advocacy and guidance from national radiotherapy research networks and international collaborators. Consistent across all three studies is a focus on the reduction of long-term radiotherapy-related toxicities and an evaluation of patient-reported outcomes and health-related quality of life, which will address key uncertainties regarding the clinical benefits of PBT. Innovative translational components will provide insights into mechanisms of toxicity and help to frame the key future research questions regarding PBT. The UK radiotherapy research community is developing and delivering an internationally impactful PBT research portfolio. The combination of data from RCTs with prospectively collected data from a national PBT outcomes registry will provide an innovative, high-quality repository for PBT research and the platform to design and deliver future trials of PBT.

Features and development trends of primary care research conducted by practice-based research networks from 1991 to 2023: a scoping review protocol.

BACKGROUND: Practice-based research networks (PBRNs) have been recognized as essential laboratories and mechanisms for developing primary care research. This scoping review aims to examine and map the features and development trends of productivity, research categories, and methods in original primary care research conducted by global PBRNs between 1991 and 2023. METHODS: We have assembled an interdisciplinary team that will undertake this scoping review, following the framework developed by Arksey and O'Malley. Targeted literature includes original primary care research conducted by PBRNs, published from January 1, 1991, to December 31, 2023. An integrated search strategy will gather publications from 3 electronic databases (PubMed, Web of Science, and Embase), 16 major primary health care journals, and 364 relevant organizations. Two experienced researchers will independently screen the titles, keywords, and abstracts of all references and extract data regarding eight key elements. Disagreements between the reviewers will be resolved through group discussions, moderated by a third reviewer. Articles to be included will (1) be conducted in the primary care context, (2) be led by PBRNs, (3) provide a full report of original research, and (4) be published in a peer-reviewed journal between the aforementioned dates in any language. Exclusions encompass reviews, letters, commentaries, case reports, and conference papers. Final data will be displayed using tables and charts according to different conceptual categories. DISCUSSION: This scoping review is one of the initial attempts to delineate the development trends and features of primary care research conducted by PBRNs. This study will provide reference information for researchers in countries/regions that are building their research infrastructure and capacity in general practice, family medicine, and primary care. SYSTEMATIC REVIEW REGISTRATION: Registered in OSF on July 25, 2022 ( https://osf.io/zgv9c ).

Molecular Epidemiologic and Geo-Spatial Characterization of Staphylococcus aureus Cultured from Skin and Soft Tissue Infections from United States-Born and Immigrant Patients Living in New York City.

(1) Background: With increasing international travel and mass population displacement due to war, famine, climate change, and immigration, pathogens, such as Staphylococcus aureus (S. aureus), can also spread across borders. Methicillin-resistant S. aureus (MRSA) most commonly causes skin and soft tissue infections (SSTIs), as well as more invasive infections. One clonal strain, S. aureus USA300, originating in the United States, has spread worldwide. We hypothesized that S. aureus USA300 would still be the leading clonal strain among US-born compared to non-US-born residents, even though risk factors for SSTIs may be similar in these two populations (2) Methods: In this study, 421 participants presenting with SSTIs were enrolled from six community health centers (CHCs) in New York City. The prevalence, risk factors, and molecular characteristics for MRSA and specifically clonal strain USA300 were examined in relation to the patients' self-identified country of birth. (3) Results: Patients born in the US were more likely to have S. aureus SSTIs identified as MRSA USA300. While being male and sharing hygiene products with others were also significant risks for MRSA SSTI, we found exposure to animals, such as owning a pet or working at an animal facility, was specifically associated with risk for SSTIs caused by MRSA USA300. Latin American USA300 variant (LV USA300) was most common in participants born in Latin America. Spatial analysis showed that MRSA USA300 SSTI cases were more clustered together compared to other clonal types either from MRSA or methicillin-sensitive S. aureus (MSSA) SSTI cases. (4) Conclusions: Immigrants with S. aureus infections have unique risk factors and S. aureus molecular characteristics that may differ from US-born patients. Hence, it is important to identify birthplace in MRSA surveillance and monitoring. Spatial analysis may also capture additional information for surveillance that other methods do not.

Characteristics of dentists in the National Dental Practice-Based Research Network.

OBJECTIVES: Our aims are to describe the characteristics of dentists, members of the US National Dental practice-based research network (PBRN) in the United States, and determine how often these dentists provide specific dental procedures. METHODS: Dentists completed a questionnaire when they enrolled in the Network about their demographic and training characteristics and characteristics of their practices and patients. Dentists also reported the frequency of providing specific dental procedures. Data were analyzed using descriptive statistics. RESULTS: Of 4,483 dentists in active clinical practice, 34% identified as females, 70% as white, and 73% as general dentists. Most dentists practiced in large metropolitan areas (87%) and in solo or small practices (72%). On average, they reported about one-half of their patients were children or older adults, a third were from historically underrepresented racial and ethnic groups, and one-quarter were covered by public insurance. Most dentists routinely performed restorations and fixed prosthetics (78%), extractions (59%), removable (44%) and implant (40%) prosthetics, and endodontics on incisor and premolar teeth (44%). CONCLUSIONS: Dentists participating in the National Dental PBRN have much in common with dentists at large. The network has a broad representation of dentists, practice types, patient populations, and treatments offered, including diversity regarding race/ethnicity, gender, insurance, and geography of its practitioners and patients. CLINICAL SIGNIFICANCE: Characteristics of National Dental PBRN dentists suggest that a broad range of dentists is interested in participating in national-level research studies, thereby enabling an array of clinical study settings and topics that can optimize the generalizability of study findings.

Padé approximant meets federated learning: A nearly lossless, one-shot algorithm for evidence synthesis in distributed research networks with rare outcomes.

OBJECTIVE: We developed and evaluated a novel one-shot distributed algorithm for evidence synthesis in distributed research networks with rare outcomes. MATERIALS AND METHODS: Fed-Padé, motivated by a classic mathematical tool, Padé approximants, reconstructs the multi-site data likelihood via Padé approximant whose key parameters can be computed distributively. Thanks to the simplicity of [2,2] Padé approximant, Fed-Padé requests an extremely simple task and low communication cost for data partners. Specifically, each data partner only needs to compute and share the log-likelihood and its first 4 gradients evaluated at an initial estimator. We evaluated the performance of our algorithm with extensive simulation studies and four observational healthcare databases. RESULTS: Our simulation studies revealed that a [2,2]-Padé approximant can well reconstruct the multi-site likelihood so that Fed-Padé produces nearly identical estimates to the pooled analysis. Across all simulation scenarios considered, the median of relative bias and rate of instability of our Fed-Padé are both <0.1%, whereas meta-analysis estimates have bias up to 50% and instability up to 75%. Furthermore, the confidence intervals derived from the Fed-Padé algorithm showed better coverage of the truth than confidence intervals based on the meta-analysis. In real data analysis, the Fed-Padé has a relative bias of <1% for all three comparisons for risks of acute liver injury and decreased libido, whereas the meta-analysis estimates have a substantially higher bias (around 10%). CONCLUSION: The Fed-Padé algorithm is nearly lossless, stable, communication-efficient, and easy to implement for models with rare outcomes. It provides an extremely suitable and convenient approach for synthesizing evidence in distributed research networks with rare outcomes.

Best Practices to Support the Self-Determination of Indigenous Communities, Collectives, and Organizations in Health Research through a Provincial Health Research Network Environment in British Columbia, Canada.

In Canada, the health research funding landscape limits the self-determination of Indigenous peoples in multiple ways, including institutional eligibility, priority setting, and institutional structures that deprioritize Indigenous knowledges. However, Indigenous-led research networks represent a promising approach to transforming the funding landscape to better support the self-determination of Indigenous peoples in health research. The British Columbia Network Environment for Indigenous Health Research (BC NEIHR) is one of nine Indigenous-led networks across Canada that supports research leadership among Indigenous (First Nations, Métis, and Inuit) communities, collectives, and organizations (ICCOs). In this paper, we share three best practices to support the self-determination of ICCOs in health research based on three years of operating the BC NEIHR: (1) creating capacity-bridging initiatives to overcome funding barriers; (2) building relational research relationships with ICCOs ("people on the ground"); and (3) establishing a network of partnerships and collaborations to support ICCO self-determination. Supporting the self-determination of ICCOs and enabling them to lead their own health research is a critical pathway toward transforming the way Indigenous health research is funded and conducted in Canada.

The community engagement course and action network: strengthening community and academic research partnerships to advance health equity.

Background: Historically Black Colleges and Universities and Minority Serving Institutions are uniquely positioned to implement community-campus research partnerships based on a history of service, the pursuit of community trustworthiness and student demographics often similar to surrounding marginalized communities. The Morehouse School of Medicine Prevention Research Center collaborates with members of Historically Black Colleges and Universities, Minority Serving Institutes, and community organizations on the Community Engaged Course and Action Network. This network is the first of its kind and aims to strengthen members' ability to implement Community-Based Participatory Research (CBPR) principles and partnerships. Projects address public health priorities including mental health among communities of color, zoonotic disease prevention, and urban food deserts. Materials and methods: To assess the effectiveness of the network, a Participatory Evaluation framework was implemented to conduct process evaluation which included review of partnership structures, operations, project implementation processes, and preliminary outcomes of the research collaborations. A focus group of Community Engagement Course and Action Network members (community and academic) was also conducted to identify benefits and challenges of the network with emphasis on key areas for improvement to further enhance the relationships between partners and to facilitate their subsequent community-campus research. Results: Network improvements were tied to themes strengthening community-academic partnerships including sharing and fellowship, coalition building and collaboration, and greater connections and awareness of community needs through their current community-academic partnerships. The need to conduct ongoing evaluation during and after implementation, for determining the early adoption of CBPR approaches was also identified. Conclusion: Evaluation of the network's processes, infrastructure, and operation provides early lessons learned to strengthen the network. Ongoing assessment is also essential for ensuring continuous quality improvement across partnerships such as determining CBPR fidelity, assessing partnership synergy, and dynamics, and for quality improvement of research protocol. The implications and potential for advancing implementation science through this and similar networks are great towards advancing leadership in modeling how foundations in community service can advance to CBPR partnership formation and ultimately, health equity approaches, that are local defined and assessed.

South Africa's indigenous microbial diversity for industrial applications: A review of the current status and opportunities.

The unique metagenomic, metaviromic libraries and indigenous micro diversity within Southern Africa have the potential for global beneficiation in academia and industry. Microorganisms that flourish at high temperatures, adverse pH conditions, and high salinity are likely to have enzyme systems that function efficiently under those conditions. These attributes afford researchers and industries alternative approaches that could replace existing chemical processes. Thus, a better understanding of African microbial/genetic diversity is crucial for the development of "greener" industries. A concerted drive to exploit the potential locked in biological resources has been previously seen with companies such as Diversa Incorporated and Verenium (Badische Anilin-und SodaFabrik-BASF) both building business models that pioneered the production of high-performance specialty enzymes for a variety of different industrial applications. The market potential and accompanying industry offerings have not been fully exploited in South Africa, nor in Africa at large. Utilization of the continent's indigenous microbial repositories could create long-lasting, sustainable growth in various production sectors, providing economic growth in resource-poor regions. By bolstering local manufacture of high-value bio-based products, scientific and engineering discoveries have the potential to generate new industries which in turn would provide employment avenues for many skilled and unskilled laborers. The positive implications of this could play a role in altering the face of business markets on the continent from costly import-driven markets to income-generating export markets. This review focuses on identifying microbially diverse areas located in South Africa while providing a profile for all associated microbial/genetically derived libraries in this country. A comprehensive list of all the relevant researchers and potential key players is presented, mapping out existing research networks for the facilitation of collaboration. The overall aim of this review is to facilitate a coordinated journey of exploration, one which will hopefully realize the value that South Africa's microbial diversity has to offer.

Towards the international interoperability of clinical research networks for rare diseases: recommendations from the IRDiRC Task Force.

BACKGROUND: Many patients with rare diseases are still lacking a timely diagnosis and approved therapies for their condition despite the tremendous efforts of the research community, biopharmaceutical, medical device industries, and patient support groups. The development of clinical research networks for rare diseases offers a tremendous opportunity for patients and multi-disciplinary teams to collaborate, share expertise, gain better understanding on specific rare diseases, and accelerate clinical research and innovation. Clinical Research Networks have been developed at a national or continental level, but global collaborative efforts to connect them are still lacking. The International Rare Diseases Research Consortium set a Task Force on Clinical Research Networks for Rare Diseases with the objective to analyse the structure and attributes of these networks and to identify the barriers and needs preventing their international collaboration. The Task Force created a survey and sent it to pre-identified clinical research networks located worldwide. RESULTS: A total of 34 responses were received. The survey analysis demonstrated that clinical research networks are diverse in their membership composition and emphasize community partnerships including patient groups, health care providers and researchers. The sustainability of the networks is mostly supported by public funding. Activities and research carried out at the networks span the research continuum from basic to clinical to translational research studies. Key elements and infrastructures conducive to collaboration are well adopted by the networks, but barriers to international interoperability are clearly identified. These hurdles can be grouped into five categories: funding limitation; lack of harmonization in regulatory and contracting process; need for common tools and data standards; need for a governance framework and coordination structures; and lack of awareness and robust interactions between networks. CONCLUSIONS: Through this analysis, the Task Force identified key elements that should support both developing and established clinical research networks for rare diseases in implementing the appropriate structures to achieve international interoperability worldwide. A global roadmap of actions and a specific research agenda, as suggested by this group, provides a platform to identify common goals between these networks.

An Investigation of Factors Influencing the Postponement of the Use of Distributed Research Networks in South Korea: Web-Based Users' Survey Study.

BACKGROUND: Distributed research networks (DRNs) offer researchers the advantage of using various big data sets that are difficult to access and use. In addition, since the data are not physically exposed to the outside, it is possible to conduct research using medical data safely without data exposure. However, researchers still have difficulties and are concerned about using DRNs. Few studies involving DRNs have been conducted from the user's viewpoint. Therefore, it is necessary to look at DRNs from the researcher's point of view and find ways to facilitate the active use of DRNs. OBJECTIVE: This study aimed to identify the factors that made researchers hesitate to use DRNs and to derive a method to facilitate active DRN use. METHODS: We conducted a web-based survey of people working in the medical fields, such as hospitals and universities. We used 131 respondents' data from a survey from December 6 to 17, 2021. We conducted multiple regression analyses to determine the factors affecting the postponement of using DRNs. In addition, 2 independent sample t tests were conducted to analyze the difference between the 2 groups according to the following factors: organization, gender, experience with DRNs, length of the research career, position, and age. RESULTS: Performance risk (t5=2.725, P=.007) and workload from DRNs (t5=3.543, P=.001) were significantly associated with users' postponement of DRN use. Researchers working at hospitals were found to feel more burdened by DRN use than researchers working at universities (t129=1.975, P=.05). It was also found that women perceived a higher privacy risk of DRNs than men (t129=-2.303, P=.02) and that those who had experience using DRNs delayed their use less than those without experience (t129=-4.215, P<.001). CONCLUSIONS: It is necessary to simplify the research and approval processes to reduce the performance risk and workload of research using DRNs. To optimize the process, DRN providers should develop a way to improve users' experiences. More user-friendly functionalities should be developed from the researcher's point of view. It is necessary to continuously promote effective functionalities for DRNs to reduce concerns about privacy risks. This study identified the concerns of DRN users in terms of DRN use and suggested ways to actively use DRNs. The derived results can be reflected in planning and developing DRNs. Our research will be helpful to prepare an activation plan for DRNs.