Boeckxstaens G E, Drug V, Dumitrascu D, Farmer A D, Hammer J, Hausken T, Niesler B, Pohl D, Pojskic L, Polster A, Simren M, Goebel-Stengel M, Van Oudenhove L, Vassallo M, Wensaas K-A, Aziz Q, Houghton L A
Translational Research Center for Gastrointestinal Disorders, KULeuven & Department of Gastroenterology and Hepatology, University Hospital Leuven, Leuven, Belgium.
Gastroenterology Department, University Hospital "St Spiridon", Gr. T.Popa University of Medicine and Pharmacy, Iasi, Romania.
Neurogastroenterol Motil. 2016 Aug;28(8):1134-47. doi: 10.1111/nmo.12886. Epub 2016 Jun 19.
Irritable bowel syndrome (IBS) is a complex condition with multiple factors contributing to its aetiology and pathophysiology. Aetiologically these include genetics, life-time events and environment, and physiologically, changes in motility, central processing, visceral sensitivity, immunity, epithelial permeability and gastrointestinal microflora. Such complexity means there is currently no specific reliable biomarker for IBS, and thus IBS continues to be diagnosed and classified according to symptom based criteria, the Rome Criteria. Carefully phenotyping and characterisation of a 'large' pool of IBS patients across Europe and even the world however, might help identify sub-populations with accuracy and consistency. This will not only aid future research but improve tailoring of treatment and health care of IBS patients.
The aim of this position paper is to discuss the requirements necessary to standardize the process of selecting and phenotyping IBS patients and how to organise the collection and storage of patient information/samples in such a large multi-centre pan European/global study. We include information on general demographics, gastrointestinal symptom assessment, psychological factors, quality of life, physiological evaluation, genetic/epigenetic and microbiota analysis, biopsy/blood sampling, together with discussion on the organisational, ethical and language issues associated with implementing such a study. The proposed approach and documents selected to be used in such a study was the result of a thoughtful and thorough four-year dialogue amongst experts associated with the European COST action BM1106 GENIEUR (www.GENIEUR.eu).
肠易激综合征（IBS）是一种复杂的病症，其病因和病理生理学涉及多种因素。病因方面包括遗传、生活事件和环境，生理方面则有运动功能、中枢处理、内脏敏感性、免疫、上皮通透性和胃肠道微生物群的变化。这种复杂性意味着目前尚无针对IBS的特异性可靠生物标志物，因此IBS仍根据基于症状的标准即罗马标准进行诊断和分类。然而，对欧洲乃至全球大量IBS患者群体进行仔细的表型分析和特征描述，可能有助于准确且一致地识别亚群。这不仅将有助于未来的研究，还能改善IBS患者治疗和医疗保健的针对性。
本立场文件的目的是讨论在如此大规模的泛欧洲/全球多中心研究中，标准化IBS患者选择和表型分析过程以及组织患者信息/样本收集和存储所需的要求。我们纳入了关于一般人口统计学、胃肠道症状评估、心理因素、生活质量、生理评估、遗传/表观遗传和微生物群分析、活检/血液采样的信息，同时讨论了与开展此类研究相关的组织、伦理和语言问题。拟议的方法以及为此类研究选定使用的文件，是与欧洲COST行动BM1106 GENIEUR（www.GENIEUR.eu）相关的专家们经过四年深入讨论的结果。
