Koert Gooijer

142 Investigation of efficacy and safety of therapeutic interventions on bleeding tendency It is crucial to evaluate the efficacy and safety of various prophylactic and therapeutic interventions for bleeding in OI, including antifibrinolytic agents, desmopressin, recombinant factor replacement therapy, and platelet transfusions. Collaboration with national and international patient networks Finally, collaboration with patients, caregivers and patient organisations is important to better understand the impact of bleeding on their quality of life and emotional well-being and to identify priority areas for research and clinical interventions. Overall, it is essential to conduct further research to improve the diagnosis, treatment, and management of the increased bleeding tendency in OI patients. Strengths The studies presented in this thesis make a strong argument for further research into the quality of life and bleeding tendency in OI. These studies offer a foundation for future work, and are likely to encourage researchers to delve more deeply into these areas. Improving quality of life and reducing complications after medical interventions are of great interest to policy makers, health- and social care providers, and above all for patients themselves. The studies on quality of life and bleeding presented in this thesis are some of the most comprehensive available, and are based on the largest cohorts of people with OI with a clinical diagnosis. In recent years, the importance of measuring quality of life in all chronic diseases has become increasingly clear. The studies presented here provide a clear baseline for quality of life in OI, as well as highlighting areas in need of improvement. Furthermore, since bleeding tendency is an issue that has received relatively little attention in OI, it is a particularly important area of study. As more attention is paid to these issues, studies such as these give valuable contributions to the concept of integrated care interventions for OI worldwide. Therefore, these articles provide a solid basis for further research contributing to the overall health of people with OI.

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