虽然我们鼓掌史高丽et al。文章就需要一种机制来报告结果在诊所照顾杜氏营养不良症患者[1],我们想正确以下DuchenneConnect注册表的详细信息。这种调整可能尤其重要考虑到有限的方法描述。研究人员和临床医生不能“搜索数据库的潜在临床试验参与者。”To protect registrants' confidentiality, registered professionals may receive only de-identified aggregated responses to registry questions. Although the table in the article reports a "negative-investigated" under "Genetic Confirmation," of our current population of over 2200 registrants, genetic confirmation has been made by DuchenneConnect's experienced, board-certified genetic counselor on 43%; this represents almost 1,000 individuals with curated genetic test results. Although the table in the article reports "negative" next to "Public Reporting" and "Outcomes Reported," DuchenneConnect provides extensive reporting to patients, families, clinicians, and researchers through the website, newsletters, webinars, yearly registry reports, presentations, and a peer-reviewed article. The DuchenneConnect patient report Clinic Survey received over 200 responses by June of 2012, not 27.
虽然我们鼓掌史高丽et al。文章就需要一种机制来报告结果在诊所照顾杜氏营养不良症患者[1],我们想正确以下DuchenneConnect注册表的详细信息。这种调整可能尤其重要考虑到有限的方法描述。研究人员和临床医生不能“搜索数据库的潜在临床试验参与者。”To protect registrants' confidentiality, registered professionals may receive only de-identified aggregated responses to registry questions. Although the table in the article reports a "negative-investigated" under "Genetic Confirmation," of our current population of over 2200 registrants, genetic confirmation has been made by DuchenneConnect's experienced, board-certified genetic counselor on 43%; this represents almost 1,000 individuals with curated genetic test results. Although the table in the article reports "negative" next to "Public Reporting" and "Outcomes Reported," DuchenneConnect provides extensive reporting to patients, families, clinicians, and researchers through the website, newsletters, webinars, yearly registry reports, presentations, and a peer-reviewed article. The DuchenneConnect patient report Clinic Survey received over 200 responses by June of 2012, not 27.
需要澄清的是,这些错误不改变作者的结论需要跟踪和报告杜氏营养不良症的临床结果。DuchenneConnect注册表有不同的主要目的(试验可行性和招聘、教育和报告总体人口和一般结果数据);然而,考虑到许多利益相关者依靠这个注册表的用途设计,我们感谢提供正确信息的机会。
1。史卡利,库克VA,公元前马歇尔,杜氏肌萎缩症等。结果能提高公开报道的数据?首页神经学2013;80:583 - 589。
披露,通过journal@neurology.org联系编辑部。首页