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it is absolutely vital that we include patients and patient organizations when were talking about clinical trial design and research because patients are the ultimate beneficiaries patients and their families are the ones who are actually participating in clinical trials also patients and patient organizations have unique insights that they can offer so if you want to improve retention in your clinical trial if you want to make sure that youre asking the right research questions if you want to make sure that youre really addressing the quality of life issues that are important to patients and their families the only way to really ensure that you are doing and achieving your mission is to involve patients and patient organizations right from the beginning of all research in all clinical trials