Department of Bioethics, Cleveland Clinic, Cleveland, Ohio 44195, USA.
Am J Med Genet A. 2010 Dec;152A(12):3051-6. doi: 10.1002/ajmg.a.33767.
Anecdotal reports suggest that disease-advocacy groups (DAOs) participate in multiple aspects of clinical research. No systemic analysis of the extent of DAO involvement in clinical genetics research has been conducted to date. We conducted a systematic review of journal articles published in 2004 and 2005 reporting clinical research on 50 genetic diseases to assess the extent to which DAOs financed the studies reported, assisted in subject recruitment, or participated in other aspects of research. Of 513 articles, 350 (68%) included a statement regarding research support. Of these articles, 114 (33%) acknowledged DAO funding. The proportion of articles reporting financial support from a DAO varied greatly by disease. Articles reporting financial support from a DAO often identified at least one additional source of support (73%). Of the articles examined, 19 (4%) acknowledged DAO assistance with subject recruitment and 11 (2%) included an author affiliated with a DAO. DAOs provide financial support for numerous clinical research studies in genetics, often in partnership with government agencies and for-profit corporations. DAOs also participate in other aspects of clinical research, including subject recruitment. Future studies should seek to characterize these research partnerships more fully.
有传闻称，疾病倡导组织（DAOs）参与了临床研究的多个方面。迄今为止，尚未对 DAO 在临床遗传学研究中参与程度进行系统分析。我们对 2004 年和 2005 年发表的 50 种遗传疾病临床研究的期刊文章进行了系统评价，以评估 DAO 为报告的研究提供资金、协助受试者招募或参与研究其他方面的程度。在 513 篇文章中，有 350 篇（68%）对研究支持情况作了说明。在这些文章中，有 114 篇（33%）承认 DAO 提供了资金。报告 DAO 提供资金的文章比例因疾病而异。报告 DAO 资金支持的文章通常确定了至少一个额外的支持来源（73%）。在所检查的文章中，有 19 篇（4%）承认 DAO 协助了受试者招募，有 11 篇（2%）的作者隶属于 DAO。DAOs 为许多遗传学临床研究提供资金支持，这些研究通常与政府机构和营利性公司合作进行。DAOs 还参与临床研究的其他方面，包括受试者招募。未来的研究应努力更全面地描述这些研究合作关系。
