139 Chapter 7 ingly with the appropriate medical specialist. This can be anticipated in a multidisciplinary approach, preferably in an OI Expert Centre. Many patients with OI are seen in the OI Expert Centre where quality of life records are registered, therefore much knowledge has been gained about what problems may occur and what treatment is preferred. For instance, due to the high risk of intracranial bleeding after mild head injury resulting in severe complications, we recommend that individuals with OI who experience even minimal head trauma should receive a CT scan to exclude fractures and post-traumatic brain injury. By working together in a multidisciplinary team, these findings can be shared and discussed quickly. By collaborating with other centres of expertise in the Netherlands and around the whole world, as well as through European Reference Networks (ERNs), this knowledge can be used for scientific research and the development of guidelines. Cooperation with patient organisations is of great importance. At both the national and international levels, there are several organisations that represent the voice of people with OI worldwide. They maintain networks, support research by providing ideas and funding and preferably collaborate as integral partners in projects. Investigate bleeding tendency and consider treatment on an individual level A work-up has been developed for bleeding diathesis in other connective tissue diseases and also to look for specific causes of mild bleeding diathesis 87,88. We advise clinicians who have to treat OI patients at risk of bleeding to investigate the bleeding history using an ISTH-BAT questionnaire and, if abnormal, to consider a coagulation screening laboratory test to exclude inherited coagulation disorders such as von Willebrand disease. And even if these tests do not reveal coagulation disorders, clinicians should be aware of the increased risk of bleeding in OI, which may be due to vascular fragility. Recommendations for further research The themes in this theses offer several options for further research. Suggestions for further research are: Develop disease-specific Patient-Reported Outcome Measures (PROMS) Quality of life studies provide a better understanding of the functioning and health of adults with OI. This better understanding can be used to design interventions and treatment protocols that
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