The support systems for Swedish clinical research have been evaluated by the Swedish Research Council and here we summarize some key issues. The shift towards precision medicine and rising requirements for post-registration »real world data« is expected to affect the system for clinical studies. The emerging requirements regarding demonstration of patient value for medical devices need to be better defined. There is a need for more meeting-places between the entrepreneurial system and the health-care system. Since research/development is often not considered to be a »core activity« in the Swedish health care system, it is frequently given a lower priority. Changing this may necessitate legislation. All interviewed, including patient organizations, were positive toward participation in research and development.
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European central hypoventilation syndrome consortium description of congenital central hypoventilation syndrome neonatal onset.
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