University of North Carolina, Department of Medicine, Division of Gastroenterology and Hepatology, Chapel Hill, North Carolina 27599, USA.
Inflamm Bowel Dis. 2012 Nov;18(11):2099-106. doi: 10.1002/ibd.22895. Epub 2012 Jan 27.
The widespread use of the Internet allows for unique research opportunities. We aimed to develop and follow an Internet-based cohort (e-cohort) of patients with self-reported inflammatory bowel diseases (IBD) over time.
We established an e-cohort of adults with IBD (CCFA Partners) by recruiting through Crohn's and Colitis Foundation of America (CCFA) email rosters, CCFA Website promotion, social media, and other publicity mechanisms. The baseline survey included modules on disease course and activity, diet and exercise, and patient-reported outcomes (PROs). Baseline characteristics of the cohort are summarized using descriptive statistics.
A total of 7819 adults with IBD joined CCFA Partners through August, 2011. The median age was 42 years (interquartile range [IQR] 30-54), 5074 (72.3%) were female. A total of 4933 (63.1%) had Crohn's disease (CD), 2675 (34.2%) had ulcerative colitis (UC), and 211 (2.7%) had IBD unspecified. For CD, the mean short CD Activity Index (CDAI) was 151.9 (standard deviation [SD] 106.4), with 2274 (59.4%) in remission. For UC, the mean simple clinical colitis activity index (SCCAI) was 3.6 (SD 2.8), with 937 (42.9%) in remission. The mean short IBD questionnaire (SIBDQ) score was 48.7 (SD 11.8). SIBDQ was inversely correlated with disease activity (P < 0.01). The mean Morisky medication adherence score (MMAS) was 5.7 (SD 2.0). MMAS scores were inversely correlated with disease activity (P < 0.01).
CCFA Partners is a novel e-cohort. Enrollment is ongoing, with surveys twice yearly. CCFA Partners represents a unique resource to study PROs and changes in disease management over time.
互联网的广泛使用为研究提供了独特的机会。我们的目的是建立并跟踪一个基于互联网的、有自我报告炎症性肠病（IBD）的患者队列（电子队列，e-cohort）。
我们通过招募美国克罗恩病和结肠炎基金会（CCFA）的电子邮件名单、CCFA 网站宣传、社交媒体和其他宣传机制，建立了一个成年人 IBD 的电子队列（CCFA 合作伙伴）。基线调查包括疾病过程和活动、饮食和运动以及患者报告的结果（PROs）模块。使用描述性统计总结队列的基线特征。
截至 2011 年 8 月，共有 7819 名成年人加入了 CCFA 合作伙伴。中位年龄为 42 岁（四分位距 [IQR] 30-54），5074 名（72.3%）为女性。共有 4933 名（63.1%）患有克罗恩病（CD），2675 名（34.2%）患有溃疡性结肠炎（UC），211 名（2.7%）患有未特指的 IBD。对于 CD，平均简短 CD 活动指数（CDAI）为 151.9（标准差 [SD] 106.4），2274 名（59.4%）处于缓解状态。对于 UC，平均简单临床结肠炎活动指数（SCCAI）为 3.6（SD 2.8），937 名（42.9%）处于缓解状态。平均简短 IBD 问卷（SIBDQ）评分为 48.7（SD 11.8）。SIBDQ 与疾病活动呈负相关（P<0.01）。平均 Morisky 药物依从性评分（MMAS）为 5.7（SD 2.0）。MMAS 评分与疾病活动呈负相关（P<0.01）。
CCFA 合作伙伴是一个新颖的电子队列。入组仍在进行中，每年进行两次调查。CCFA 合作伙伴代表了一个独特的资源，可以研究 PROs 和随着时间的推移疾病管理的变化。
