Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE

Background!#!The TRANSLATE-NAMSE project with the strengthening of the centers for rare diseases with their affiliation to the European Reference Networks was a major step towards the implementation of the German National Plan of Action for People with Rare Diseases establishing better care structures. As primary care physicians, general practitioners and pediatricians play a central role in the diagnosis of patients with rare disease, as it is usually them referring to specialists and rare disease centers. Therefore, the interface management between primary care physicians and the centers for rare diseases is of particular importance.!##!Methods!#!In a mixed-method-approach an anonymous postal survey of 1,500 randomly selected primary care physicians in Germany was conducted with focus on (1) knowledge about a center for rare diseases and how it works, (2) in case of cooperation, satisfaction with the services provided by centers, and (3) expectations and needs they have with regard to the centers. In addition, in-depth telephone interviews were conducted with physicians who had already referred patients to a center.!##!Results!#!In total, 248 physicians responded to the survey, and 15 primary care physicians were interviewed. We observed a wide lack of knowledge about the existence of (45.6% confirmed to know at least one center) about how to access rare disease centers (50.4% of those who know a center confirmed knowledge) and what the center specializes in. In case of cooperation the evaluation was mostly positive.!##!Conclusion!#!To improve medical care, the interplay between primary care physicians and rare disease centers needs to be strengthened. (1) To improve the communication, the objectives and functioning of the rare disease centers should become more visible. (2) Other projects dealing with the analysis and improvement of interface management between centers and primary care physicians, as described in the National Plan of Action for People with Rare Diseases, need to be implemented immediately. (3) If the project is evaluated positively, the structures of TRANSLATE-NAMSE should be introduced nationwide into the German health care system to ensure comprehensive, quality-assured care for people with rare diseases with special consideration of the key role of primary care physicians-also taking into account the financial expenditures of this new care model

Evaluating core competencies and learning outcomes for training the next generation of sustainability researchers

The need to train sustainability scientists and engineers to address the complex problems of our world has never been more apparent. We organized an interdisciplinary team of instructors from universities in the states of Maine, New Hampshire, and Rhode Island who designed, taught, and assessed a multi-university course to develop the core competencies necessary for advancing sustainability solutions. Lessons from the course translate across sustainability contexts, but our specific focus was on the issues and trade-offs associated with dams. Dams provide numerous water, energy, and cultural services to society while exacting an ecological toll that disrupts the flow of water, fish, and sediment in rivers. Like many natural resource management challenges, effective dam decisions require collaboration among diverse stakeholders and disciplines. We linked key sustainability principles and practices related to interdisciplinarity, stakeholder engagement, and problem-solving to student learning outcomes that are generalizable beyond our dam-specific context. Students and instructors co-created class activities to build capacity for interdisciplinary collaboration and encourage student leadership and creativity. Assessment results show that students responded positively to activities related to stakeholder engagement and interdisciplinary collaboration, particularly when practicing nested discussion and intrapersonal reflection. These activities helped broaden students’ perspectives on sustainability problems and built greater capacity for constructive communication and student leadership