Leigh syndrome global patient registry: uniting patients and researchers worldwide.

BACKGROUND: Leigh Syndrome (LS) is a rare genetic neurometabolic disorder, that leads to the degeneration of the central nervous system and subsequently, early death. LS can be caused by over 80 mutations in mitochondrial or nuclear DNA. Patient registries are important for many reasons, such as studying the natural history of the disease, improving the quality of care, and understanding the healthcare burden. For rare diseases, patient registries are significantly important as patient numbers are small, and funding is limited. Cure Mito Foundation started a global patient registry for LS in September 2021 to identify and learn about the LS patient population, facilitate clinical trial recruitment, and unite international patients and researchers. Priorities were to allow researchers and industry partners to access data at no cost through a clear and transparent process, active patient engagement, and sharing of results back to the community. RESULTS: Patient registry platform, survey design, data analysis process, and patient recruitment strategies are described. Reported results include demographics, diagnostic information, symptom history, loss of milestones, disease management, healthcare utilization, quality of life, and caregiver burden for 116 participants. Results show a high disease burden, but a relatively short time to diagnosis. Despite the challenges faced by families impacted by Leigh syndrome, participants, in general, are described as having a good quality of life and caregivers are overall resilient, while also reporting a significant amount of stress. CONCLUSION: This registry provides a straightforward, no-cost mechanism for data sharing and contacting patients for clinical trials or research participation, which is important given the recruitment challenges for clinical trials for rare diseases. This is the first publication to present results from a global patient registry for Leigh Syndrome, with details on a variety of patient-specific and caregiver outcomes reported for the first time. Additionally, this registry is the first for any mitochondrial disease with nearly 70% of participants residing outside of the United States. Future efforts include continued publication of results and further collaboration with patients, industry partners, and researchers.

Preceptor tips for navigating generational differences with introductory and advanced pharmacy practice experience students.

Ideally, precepting during introductory and advanced pharmacy practice experiences should be tailored to meet the individualized needs of learners. Understanding generational similarities and differences that exist between both learners and educators will facilitate meaningful interaction and improve learning outcomes. A common pitfall among preceptors is to judge the values of their pharmacy learners based on the stereotypes of the generations. This tends to be more evident when the preceptor's generation differs from the generation of the learner. The following article describes generational attributes that influence experiential learning with general tips for how preceptors can use this information to enhance their interactions with learners. By comparing and contrasting the predominant generations in the current pharmacy education landscape (Baby Boomers, Generation X, and Millennials), the article will demonstrate how multi-generational interactions impact pharmacy education. As Millennials are the majority of experiential learners, the focus will be on their learning preferences and how preceptors can help engage these learners. Practical advice and tools on engaging Millennial learners will be reviewed. Case vignettes will demonstrate how to identify ways to tailor precepting to meet the needs of the learner, avoid common pitfalls, facilitate meaningful interaction, and, ultimately, improve learning outcomes.

Preceptor tips for navigating generational differences with introductory and advanced pharmacy practice experience students

Ideally, precepting during introductory and advanced pharmacy practice experiences should be tailored to meet the individualized needs of learners. Understanding generational similarities and differences that exist between both learners and educators will facilitate meaningful interaction and improve learning outcomes. A common pitfall among preceptors is to judge the values of their pharmacy learners based on the stereotypes of the generations. This tends to be more evident when the preceptor's generation differs from the generation of the learner. The following article describes generational attributes that influence experiential learning with general tips for how preceptors can use this information to enhance their interactions with learners. By comparing and contrasting the predominant generations in the current pharmacy education landscape (Baby Boomers, Generation X, and Millennials), the article will demonstrate how multi-generational interactions impact pharmacy education. As Millennials are the majority of experiential learners, the focus will be on their learning preferences and how preceptors can help engage these learners. Practical advice and tools on engaging Millennial learners will be reviewed. Case vignettes will demonstrate how to identify ways to tailor precepting to meet the needs of the learner, avoid common pitfalls, facilitate meaningful interaction, and, ultimately, improve learning outcomes

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Igniting the fire within: a primer on political advocacy for pharmacy professionals.

Due to the expanding role of pharmacy in health care, it is imperative that pharmacy professionals work together to advocate for the profession. An English-language only literature search was conducted of the PubMed and Medline databases using the key words advocacy, grassroots, political action committee, lobbying, politics, political action, legislation, letter writing, pharmacy, pharmacist, Capitol Hill. Up-to-date information regarding pharmacy-specific advocacy was limited and difficult to locate. Information from the literature search was supplemented with interviews of professionals actively engaged in advocacy, personal experience, and Web sites of national pharmacy organizations. This primer ignites the fire for political advocacy within pharmacy professionals by reinforcing the significant impact that advocacy has on the profession and by providing information on how to become involved. The primer provides a comprehensive "pocket guide" of resources combined into an easy-to-use reference for pharmacy professionals and outlines a structured approach on how to become a pharmacy advocate, ranging from a minimal level of involvement to master political activist, and to promote interest among pharmacy professionals to become more engaged with advocacy. Even a small act of advocacy or volunteerism can transform a spark into a raging fire.