Kariv Revital, Turner Dan, Rosenblum Joseph, Morad Vered, Zigman Nir, Friedman Mira, Focht Gili, Leder Oren, Avitzour Malka, Goren Iris
Health Division, Maccabi Healthcare Services.
Department of Gastroenterology, Tel Aviv Sourasky Medical Center.
Harefuah. 2018 Oct;157(10):655-659.
Inflammatory bowel diseases (IBD) are becoming a significant cause for chronic long term complex morbidity, particularly among adolescents and young adults. IBD patients require multidisciplinary management and considerable health resources. Recent advances and developments in the diagnostics and therapeutic options require identification and tight monitoring of these patients at both hospital and community level for better management and care.
To establish at Maccabi Healthcare Services (MHS) a dedicated registry for inflammatory bowel disease patients for long term monitoring in order to optimize care, better use of health resources and to promote high quality research.
A national project, initiated and headed by a team from Shaare Zedek Medical Center aimed to resolve the complexity in identifying IBD patients at the community setting. The project included data from all Israeli HMOs and major hospitals, that was incorporated into various algorithms to determine prevalence and incidence and to distinguish between Crohn's disease and ulcerative colitis diagnoses. Eventually, an algorithm that includes the number of diagnoses, number of purchases and duration of IBD-related medications showed the best results for separating those that suffer from IBD and those that do not. This algorithm was further validated by chart review.
According to the established registry criteria there were 14488 IBD patients in MHS, 13000 active. Additionally we have established an ongoing platform for ongoing monitoring of clinical, therapeutic, laboratory and imaging information.
Establishing an IBD registry in MHS was enabled by a national project that combined deep professional knowledge of the disease by leading academic centers together with advanced informatics and community large data. We now move on to operate the registry in real life, together with live monitoring of various parameters in order to promote excellent care, communication with patients, management and control and to enable prospective high quality research.
炎症性肠病（IBD）正成为慢性长期复杂发病的一个重要原因，尤其是在青少年和年轻人中。IBD患者需要多学科管理和大量医疗资源。诊断和治疗选择方面的最新进展和发展要求在医院和社区层面识别并密切监测这些患者，以便更好地管理和护理。
在马卡比医疗服务机构（MHS）建立一个炎症性肠病患者专用登记册，用于长期监测，以优化护理、更好地利用医疗资源并促进高质量研究。
一个由沙雷兹德克医疗中心的团队发起并牵头的全国性项目，旨在解决在社区环境中识别IBD患者的复杂性问题。该项目纳入了所有以色列健康维护组织（HMO）和主要医院的数据，并将其纳入各种算法，以确定患病率和发病率，并区分克罗恩病和溃疡性结肠炎的诊断。最终，一个包含诊断数量、购买数量和IBD相关药物使用时长的算法在区分IBD患者和非IBD患者方面显示出最佳效果。该算法通过病历审查进一步得到验证。
根据既定的登记标准，MHS中有14,488名IBD患者，其中13,000名处于活动期。此外，我们还建立了一个持续的平台，用于持续监测临床、治疗、实验室和影像信息。
MHS中IBD登记册的建立得益于一个全国性项目，该项目将领先学术中心对该疾病的深厚专业知识与先进的信息学和社区大数据结合在一起。我们现在开始在现实生活中运营该登记册，并实时监测各种参数，以促进优质护理、与患者沟通、管理和控制，并开展前瞻性高质量研究。
