Cross-sectional and longitudinal growth patterns in osteogenesis imperfecta: implications for clinical care.

BACKGROUND: There is strikingly limited information on linear growth and weight in the different types of osteogenesis imperfecta (OI). Here, we define growth patterns further with the intent of implementing appropriate adaptations proactively. METHODS: We report cross-sectional anthropometric data for 343 subjects with different OI types (144 children, 199 adults). Longitudinal height data for 36 children (18 girls, 18 boys) with OI type I and 10 children (8 girls, 2 boys) with OI type III were obtained. RESULTS: In all cases, the height Z-scores were negatively impacted, and final height Z-scores were impacted the most. In type I, the growth velocities taper near puberty, and there is a blunted pubertal growth spurt. The growth velocities of children with type III decelerate before age 5 y; poor growth continues without an obvious pubertal growth spurt. Obesity is a concern for all patients with OI, with type III patients being the most affected. CONCLUSION: The linear growth patterns, in addition to the marked increase in weight over time, indicate a need for lifestyle modifications early in childhood, especially a need for weight control. Further definition of the anthropometric measures in OI enables patients to begin modifications as early as possible.

Integrating community voices in the research continuum: Perspectives on a consultation service.

The Community Research Advisory Council (C-RAC) of the Johns Hopkins Institute for Clinical and Translational Research was established in 2009 to provide community-engaged research consultation services. In 2016-2017, C-RAC members and researchers were surveyed on their consultation experiences. Survey results and a 2019 stakeholder meeting proceeding helped redesign the consultation services. Transitioning to virtual consultations during COVID-19, the redesigning involved increasing visibility, providing consultation materials in advance, expanding member training, and effective communications. An increase in consultations from 28 (2009-2017) to 114 (2020-2022) was observed. Implementing stakeholder-researcher inputs is critical to holistic and sustained community-engaged research.

Storytelling training to promote stakeholder engagement in research dissemination.

Storytelling is increasingly recognized as a culturally relevant, human-centered strategy and has been linked to improvements in health knowledge, behavior, and outcomes. The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research designed and implemented a storytelling training program as a potentially versatile approach to promote stakeholder engagement. Data collected from multiple sources, including participant ratings, responses to open-ended questions, and field notes, consistently pointed to high-level satisfaction and acceptability of the program. As a next step, the storytelling training process and its impact need to be further investigated.

Digital and virtual strategies to advance community stakeholder engagement in research during COVID-19 pandemic.

Despite the adversity presented by COVID-19 pandemic, it also pushed for experimenting with innovative strategies for community engagement. The Community Research Advisory Council (C-RAC) at Johns Hopkins University (JHU), is an initiative to promote community engagement in research. COVID-19 rendered it impossible for C-RAC to conduct its meetings all of which have historically been in person. We describe the experience of advancing the work of the C-RAC during COVID-19 using digital and virtual strategies. Since March 2020, C-RAC transitioned from in person to virtual meetings. The needs assessment was conducted among C-RAC members, and individualized solutions provided for a successful virtual engagement. The usual working schedule was altered to respond to COVID-19 and promote community engaged research. Attendance to C-RAC meetings before and after the transition to virtual operation increased from 69% to 76% among C-RAC members from the community. In addition, the C-RAC launched new initiatives and in eighteen months since January 2020, it conducted 50 highly rated research reviews for 20 research teams. The experience of the C-RAC demonstrates that when community needs are assessed and addressed, and technical support is provided, digital strategies can lead to greater community collaborations.

Approaches to Measuring Trends in Interdisciplinary Research Publications at One Academic Medical Center.

PURPOSE: To determine if interdisciplinary research has increased between 2005 and 2015, based on an analysis of journal articles containing at least 1 author from Johns Hopkins University, and to compare different methods for determining the disciplinarity of research articles. METHOD: In 2017-2018, 100 peer-reviewed biomedical science articles were randomly selected from years 2005, 2010, and 2015 and classified as unidisciplinary or interdisciplinary based on Scopus author affiliation data (method 1). The corresponding authors of the 2010 and 2015 articles were sent a survey asking them to describe the disciplines involved in their research (method 2) and to define their research as unidisciplinary or interdisciplinary based on provided definitions (method 3). RESULTS: There was a statistically significant increase in the proportion of interdisciplinary articles in 2015 compared with both 2005 and 2010 (P = .02). Comparison of the 3 methods indicated that 45% of the articles were classified as interdisciplinary based on author affiliation data (method 1), 40% based on the corresponding author's description of the disciplines involved in their research (method 2), and 71% based on the corresponding author's definition of their article's disciplinarity (method 3). There was a statistically significant difference in the proportion of articles classified as interdisciplinary between methods 1 and 3 (P < .001) and between methods 2 and 3 (P < .001). CONCLUSIONS: This study found that interdisciplinary research increased at Johns Hopkins University over the past decade and highlights the difference between corresponding authors' views of their own research and other methods for determining interdisciplinarity.