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OHDSI Large Scale Network Study 2020


(Gregory Klebanov) #1

To follow up on Patrick’s (@Patrick_Ryan) excellent 2019 wrap up presentation, I would like to propose the “big impact” network research study for 2020 focused on inflammatory bowel disease (IBD), which includes ulcerative colitis (UC) and Crohn’s disease.

After one of my close family members has been diagnosed with UC, I have been doing a lot of research on this difficult disease. I was surprised to discover that that there so many people around me affected and truly suffering from this currently incurable condition. Suffering not just from severe pain, but from complications to their daily life.

What is really surprising is that no one really knows what is causing IBD. Possibly genetics, possibly the use of antibiotics, maybe lifestyle factors e.g. foods, smoking, sterile environments etc. There is a theory that IBD is on a rise in developed countries and less prevalent in less developed but it is possible that this statistics is skewed by people being diagnosed or not. There is a lot of mystery in this disease but what is evident that it is on a rise - including in countries such as European Nordic countries, US, Canada etc… (https://www.sciencedirect.com/science/article/pii/S2468125319303334). Too many kids are being diagnosed with and suffering from IBD

Not only IBD is a chronic disease that is causing a lot of suffering in people, it is one of the causes of colorectal cancers later in life (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725331/) which could lead to eventual death in many IBD patients.

Quite a few pharmaceutical companies today are producing or developing new novel treatments for IBD, including biologics. But the this condition requires a personalized treatment and there is not black and white decision on what would work for what kind of patient better. And there is no cure - YET. But, there is a promise with many new treatments in a pipeline and new research and methods advancing such as fecal microbial transplants and nutrition treatments.
(https://www.mountsinai.org/care/gastroenterology/services/fecal-microbial-transplant) https://www.cuimc.columbia.edu/news/leading-ibd-experts-join-columbia

However you look at it, I think this is a perfect OHDSI case that could benefit from a large scale global network study utilizing data from patients across the world and bring real value and answers to so many people - across the world - suffering from this currently incurable disease. I am sure it will also spark a lot of interest in various organizations who are trying to tackle this condition today - from big pharma to hospital centers to government institutions


(Gerardo Machnicki) #2

Interesting, @gregk

In regards to

It is probably not too surprising that a recent systematic review in Latin America https://www.sciencedirect.com/science/article/pii/S2212109918300839 concluded that:

The burden of IBD in Latin America seems to be important but there is a considerable gap of evidence in the region. More studies of adequate methodological quality from representative samples and the use of standardized definitions and outcomes are required. This information could assist Latin American decision makers to design strategies to deliver high-quality, patient-centered care for the population with IBD.

Pointing to a paucity of evidence in the region in different dimensions of IBD understanding.


(Theresa Burkard) #3

Interestingly, the association between incident IBD and obesity seems somewhat unclear



but it was reported that weight loss surgery can trigger IBD…


(Seng Chan You) #4

Recently, impressive paper was published from Korea about ulcerative colitis. It showed that prognosis of Korean patients with UC might be better than that of Western people. But this was single-country study. The first author of this paper is a member of OHDSI Korea.


(Kristin Kostka, MPH) #5

+1 on this! Thank you for sharing your personal experience, @gregk! These kinds of studies are the best because they have :heart::. :blush:

Now comes the fun part… does anyone have a phenotype for IBD (UC and CD) on the OMOP CDM that they like?


(Vojtech Huser) #6

I started a draft definition
http://atlas-demo.ohdsi.org/#/cohortdefinition/1772932

Just to demonstrate with some quick R code to estimate size of the cohort, you can use the code here https://github.com/vojtechhuser/SkeletonDescriptiveStudy/blob/master/extras/CodeToRun.R#L100

(working instance of Atlas is not required. All you need is your data and R and basic R expertise)

key functions (pre-defined for you) are executeExternalCohort and fetchCohortCounts


(George Hripcsak) #7

Great. We’ll certainly run whatever studies come out.


(Matt Spotnitz) #8

This sounds like a great research study! I think it may be interesting to characterize the cumulative incidence of various disease following an IBD diagnosis.


(Iannis Drakos) #9

Great preliminary work Greg!
We will be fully on board with all future developments that may arise from this initiative.


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