Villarini Anna, Villarini Milena, Gargano Giuliana, Moretti Massimo, Berrino Franco
Dipartimento di medicina predittiva e per la prevenzione, Fondazione IRCCS - Istituto nazionale dei tumori di Milano.
Dipartimento di scienze farmaceutiche, Unità di sanità pubblica, Università degli Studi di Perugia.
Epidemiol Prev. 2015 Sep-Dec;39(5-6):402-5.
In the field of cancer prevention, the public ask to be involved more actively in scientific research and in the production of knowledge. This is leading to an increase of participatory projects in the field of epidemiology. Community-based participatory research (CBPR) has received considerable attention in the past 15 years; it is becoming a recognized and important approach in addressing health disparities in cancer prevention. The increasing accessibility of new methods of comparison, discussion and information allows to link a large number of people. The project DianaWeb was born in 2015 at the Department of Predictive Medicine and Prevention of the National Cancer Institute, Milan. This CBPR involves women with diagnosis of breast cancer (BC). DianaWeb communications are based on an interactive online platform developed "ad hoc" (www.dianaweb.org). With very few exceptions, all communication between participants and research team will be on the web. The recruitment is done through Internet, hospitals, physicians, media and word of mouth. Women can join the project independently, under the control of researchers and the aim of the study is to assess whether healthy eating and regular physical activity can improve the quality of life and increase survival rates in women with diagnosis of BC. About 50,000 Italian women with a diagnosis of BC with or without metastasis, local recurrence or second cancers; with in situ or invasive cancer, whatever the disease stage at diagnosis, whatever histological diagnosis, whatever the time elapsed since diagnosis should be recruited in the DianaWeb project. The volunteers are asked to send clinical information about their condition from diagnosis onwards, on their weight and other anthropometric measures, lifestyles and nutrition through online questionnaires. Moreover, the women enrolled in the study, after login, can access evidence-based information and results obtained during the project (individual and whole community data). Volunteers can also contribute to the growth of knowledge about lifestyles to be adopted by sharing recipes, movement strategies, how to manage the change in daily practice, which will be judged by the researchers to verify the compliance with the recommendations provided before networking.
在癌症预防领域,公众要求更积极地参与科学研究和知识产出。这导致流行病学领域的参与式项目有所增加。基于社区的参与式研究(CBPR)在过去15年中受到了广泛关注;它正成为解决癌症预防中健康差异问题的一种公认且重要的方法。新的比较、讨论和信息方法日益普及,使得大量人群能够建立联系。“戴安娜网络”项目于2015年在米兰国家癌症研究所预测医学与预防部诞生。这个CBPR项目涉及被诊断患有乳腺癌(BC)的女性。“戴安娜网络”的交流基于一个专门开发的交互式在线平台(www.dianaweb.org)。除了极少数情况外,参与者与研究团队之间的所有交流都将在网上进行。招募工作通过互联网、医院、医生、媒体和口碑进行。女性可以在研究人员的监督下独立加入该项目,研究目的是评估健康饮食和定期体育活动是否能改善被诊断患有BC的女性的生活质量并提高生存率。在“戴安娜网络”项目中,应招募约50000名被诊断患有BC的意大利女性,无论有无转移、局部复发或二次癌症;无论癌症是原位癌还是浸润性癌,无论诊断时的疾病阶段如何,无论组织学诊断结果如何,无论诊断后经过了多长时间。志愿者被要求通过在线问卷发送从诊断开始的关于其病情、体重及其他人体测量指标、生活方式和营养状况的临床信息。此外,参与研究的女性登录后可以获取基于证据的信息以及项目期间获得的结果(个人和整个社区的数据)。志愿者还可以通过分享食谱、运动策略以及如何在日常实践中进行调整等方式,为有关应采用的生活方式的知识增长做出贡献,研究人员将对这些内容进行评判,以核实其是否符合联网前提供的建议。