Université Paris-Est, UMR_S955, UPEC, F-94000 Créteil, France ; Inserm, U955, Equipe Psychiatrie Génétique, F-94000 Créteil, France ; AP-HP, Hôpital H. Mondor - A. Chenevier, Pôle de Psychiatrie, F-94000 Créteil, France ; Fondation FondaMental, fondation de coopération scientifique, F-94000 Créteil, France.
KG Jebsen Centre for Psychosis Research, Division of Mental Health and Addiction, Oslo University Hospital & Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
Int J Bipolar Disord. 2013 Apr 17;1:2. doi: 10.1186/2194-7511-1-2. eCollection 2013.
Bipolar disorders rank as one of the most disabling illnesses in working age adults worldwide. Despite this, the quality of care offered to patients with this disorder is suboptimal, largely due to limitations in our understanding of the pathology. Improving this scenario requires the development of a critical mass of expertise and multicentre collaborative projects. Within the framework of the European FP7 programme, we developed a European Network of Bipolar Research Expert Centres (ENBREC) designed specifically to facilitate EU-wide studies. ENBREC provides an integrated support structure facilitating research on disease mechanisms and clinical outcomes across six European countries (France, Germany, Italy, Norway, Spain and the UK). The centres are adopting a standardised clinical assessment that explores multiple aspects of bipolar disorder through a structured evaluation designed to inform clinical decision-making as well as being applicable to research. Reliable, established measures have been prioritised, and instruments have been translated and validated when necessary. An electronic healthcare record and monitoring system (e-ENBREC©) has been developed to collate the data. Protocols to conduct multicentre clinical observational studies and joint studies on cognitive function, biomarkers, genetics, and neuroimaging are in progress; a pilot study has been completed on strategies for routine implementation of psycho-education. The network demonstrates 'proof of principle' that expert centres across Europe can collaborate on a wide range of basic science and clinical programmes using shared protocols. This paper is to describe the network and how it aims to improve the quality and effectiveness of research in a neglected priority area.
双相情感障碍在全球范围内是导致成年劳动力丧失能力的最主要疾病之一。尽管如此,这种疾病患者所接受的治疗质量并不理想,这主要是由于我们对其病理的理解存在局限性。要改善这种情况,需要培养一大批专业人才并开展多中心合作项目。在欧盟 FP7 计划的框架内,我们开发了一个专门用于促进全欧盟范围内研究的欧洲双相情感障碍研究专家中心网络(ENBREC)。ENBREC 提供了一个综合支持结构,通过旨在为临床决策提供信息的结构化评估,促进对疾病机制和临床结果的研究,该评估适用于研究。已经优先考虑了可靠的既定措施,并对必要的工具进行了翻译和验证。开发了一个电子医疗记录和监测系统(e-ENBREC©)来整理数据。正在进行关于认知功能、生物标志物、遗传学和神经影像学的多中心临床观察研究和联合研究的方案;已经完成了关于常规实施心理教育策略的试点研究。该网络证明了欧洲各地的专家中心可以使用共享方案在广泛的基础科学和临床项目上进行合作的“原则性证明”。本文旨在介绍该网络以及它如何旨在提高一个被忽视的优先领域的研究质量和效果。