BACKGROUND: Recruitment of sufficient and diverse participants into clinical research for Alzheimer\'s disease and related dementias remains a formidable challenge. The primary goal of this manuscript is to provide an overview of an approach to diversifying research recruitment and to provide case examples of several methods for achieving greater diversity in clinical research enrollment.
METHODS: The University of Kansas Alzheimer\'s Disease Research Center (KU ADRC) developed MyAlliance for Brain Health (MyAlliance), a service-oriented recruitment model. MyAlliance comprises a Primary Care Provider Network, a Patient and Family Network, and a Community Organization Network, each delivering tailored value to relevant parties while facilitating research referrals.
RESULTS: We review three methods for encouraging increased diversity in clinical research participation. Initial outcomes reveal an increase in underrepresented participants from 17% to 27% in a research registry. Enrollments into studies supported by the research registry experienced a 51% increase in proportion of participants from underrepresented communities.
CONCLUSIONS: MyAlliance shifts power, resources, and knowledge to community advocates, promoting brain health awareness and research participation, and demands substantial financial investment and administrative commitment. MyAlliance offers valuable lessons for building sustainable, community-centered research recruitment infrastructure, emphasizing the importance of localized engagement and cultural understanding.
UNASSIGNED: MyAlliance led to a significant increase in the representation of underrepresented racial and ethnic groups and individuals from rural areas.The service-oriented approach facilitated long-term community engagement and trust-building, extending partnerships between an academic medical center and community organizations.While effective, MyAlliance required substantial financial investment, with costs including infrastructure development, staff support, partner organization compensation, and promotional activities, underscoring the resource-intensive nature of inclusive research recruitment efforts.

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OBJECTIVE: The increasing demands for curated, high-quality research data are driving the emergence of a novel registry type. The need to assemble, curate, and export this data grows, and the conventional simplicity of registry models is driving the need for advanced, multimodal data registries-the dawn of the next-generation registry.
METHODS: The article provides an outline of the technology roles and responsibilities needed for successful implementations of next-generation registries.
RESULTS: We propose a framework for the planning, construction, maintenance, and sustainability of this new registry type.
CONCLUSIONS: A rubric of organizational, computational, and human resource needs is discussed in detail, backed by over 40 years of combined in-the-field experiences by the authors.
CONCLUSIONS: A novel field, registry science, within the clinical research informatics domain, has arisen to offer its insights into conceiving, structuring, and sustaining this new breed of tools.

OBJECTIVE: (1) To assess the effectiveness of the Sausage Technique™ when applied for lateral bone augmentation by multiple experienced clinicians; (2) To identify risk indicators for a poor outcome and to assess the need for adjunctive surgery.
METHODS: All patients who had been treated with the Sausage Technique™ for lateral bone augmentation by three experienced surgeons between January 2019 and December 2021 were included in a retrospective case series. The Sausage Technique™ technique includes the use of autogenous bone chips and deproteinized bovine bone mineral (1:1 ratio), covered with a stretched and pinned collagen membrane. The increase in alveolar width between the pre-operative situation and 9 months was assessed at different levels on superimposed cone-beam CT scans.
RESULTS: Twenty-five augmentations performed in 25 patients (17 males, 8 females, mean age 51 years) were available for evaluation. Mean alveolar width increased from 4.35 to 7.43 mm at 3 mm below the crest. The mean increase of 3.08 mm (95% CI 2.10-4.06; p < 0.001) was significant. The outcome of non-containing single implant sites was significantly worse than the outcome of other sites (MD 2.67 mm; p = 0.008). The need for regrafting was 4% and the need for soft tissue augmentation was 48%. Twenty percent of the patients needed soft tissue augmentation due to a lack of keratinized mucosa width, and 32% due to a lack of buccal convexity. The former was mainly needed at multiple implant sites, whereas the latter was mainly required at single implant sites. All implant survived and remained healthy until the final follow-up.
CONCLUSIONS: The Sausage Technique™ is an effective bone augmentation technique. Non-containing single implant sites were associated with a poor outcome and adjunctive soft tissue augmentation was needed in about half of the patients.

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UNASSIGNED: Traumatic brain injury (TBI) is a highly prevalent neurological disorder that affects a gradually increasing proportion of older adults. Chronic kidney disease (CKD) significantly contributes to global years of life lost, with an estimated one-tenth of the global population affected by CKD. However, it remains unclear whether CKD impacts TBI prognosis. We conducted a case-control study to investigate the clinical outcomes of TBI patients with or without CKD comorbidity and identified the risk factors associated with a poor prognosis.
UNASSIGNED: From January 2017 through April 2023, 11 patients with TBI and CKD were included, and 27 control TBI cases with normal kidney function were matched by age, gender, and admission Glasgow Coma Scale (GCS) score as the control group.
UNASSIGNED: The CKD TBI group had a significantly lower GCS score upon discharge (7.1 ± 5.9) compared to the non-CKD TBI group (13.1 ± 2.6) (p < 0.01). ICU stay time and hospitalization expenses were higher in the CKD group than the non-CKD group, though there were no statistical differences. Additionally, patients in the CKD TBI group had a higher frequency of hospital-acquired infections (54.4%) compared with those in the non-CKD TBI group (7.4%) (p < 0.01). The two groups exhibited no differences in hemoglobin levels, albumin levels, or coagulation function. Logistic regression analysis showed that advanced age, low admission GCS score, elevated blood urea, and creatinine levels were associated with a poor neurological prognosis.
UNASSIGNED: TBI patients comorbid with CKD have a poorer prognosis than those with normal kidney function.

UNASSIGNED: Medical research and development (R&D) is an undoubtedly relevant activity to drive innovation, improve healthcare policies and bring patients treatment opportunities for common and rare diseases. Equity and inclusion are matters of concern in research. High-income countries\' research teams are more likely to have more impactful publications, grant funding, and clinical trials than middle or low-income countries. Low budget allocations to R&D and existing gaps in regulatory frameworks are some obstacles to growth. This unvirtuous cycle results in scarce advances in common endemic diseases and the underrepresentation of specific populations in innovative therapeutics research.
UNASSIGNED: We conducted a policy review and qualitative research to determine the principal characteristics of basic and clinical medical research in Paraguay, as well as barriers and facilitators to improve innovative R&D strategies in this country. To this aim, we examined published articles from 2005 to 2020, the organizational structure of national research agencies, the current regulation framework, and the composition and experience of local research groups and ethical review boards (ERBs). In addition, we performed semi-structured interviews to evaluate perceptions and expectations from different stakeholders, including investigators, ERBs members, sponsor associates, and Regulatory Agency executive staff.
UNASSIGNED: In 2018, Paraguay ranked 10th out of 12 South American countries in total number of publications and cumulative h-index score. Total Gross Domestic Product (GDP) allocation for R&D was 0.15%, ranking eighth out of 12 in the region. In 2021, the number of trials registered on ClinicalTrials.gov was 52, with only 16 ongoing recruiting studies at that time.Some of the main barriers identified included low incentives for academic careers and lack of experience in pharmaceutical research. An emergent necessity to develop a straight- forward normative framework was detected. Main facilitators included the development of two research initiative programs (PRONII and PROCIENCIA) from CONACYT (National Council of Science and Technology) which were associated with higher budget allocation and total number of publications in the 2011 to 2017 period. A total of six stakeholders participated in the semi-structured surveys. Interviewees highlighted the necessity of a centralized policy to promote R&D, which incorporates investigators and ERBs training, the development of standardized procedures, and the dissemination of research activities. Sponsor associates underlined that real-world evidence may represent a distinctive opportunity to enhance local research.
UNASSIGNED: Coordinated efforts are needed to break the unvirtuous cycle. There is an increasing interest in enhancing health research in Paraguay, materialized in the creation of specific programs that encourage the collaborative work of healthcare providers, basic scientists, and private investors. Nonetheless, a comprehensive approach is needed also to strengthen regulatory agencies and attract external sponsorship. While modern and currently popular topics, including artificial intelligence, real-world data, and translational research may represent key opportunities to seek investment, special policies should be adopted to prioritize research on the determinants of health in the Paraguayan population.

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