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Call for collaborators: inflammatory bowel disease (IBD) phenotyping

Hi All,

We are currently launching, together with leading IBD clinicians, a comprehensive IBD research studying multiple aspects of the disease, including risk factors, prediction of disease trajectory, and the effect of various interventions. As the first and significant step, however, we’d like to launch a phenotyping effort for IBD (and its related diseases: ulcerative colitis and Crohn’s disease) and globally characterize IBD patients. @Patrick_Ryan has kindly agreed to join and mentor us in this project. We would love for all of you who are interested in IBD and/or disease phenotyping to join us. Please let me know if you are interested!



@cyanover I would love to hear about your methodology and follow your progress. All the best!

I am interested!

Unfortunately I might not be able to contribute as much as a traditional collaborator due to the narrow data use agreements for my institution’s database - but we’ve got a large number of community GI practices in our network and I have experience working with IBD EHR data, so hopefully there’s some way I can help out.

It’d be my first phenotyping collaboration, too, so I’m excited to learn :slight_smile:

I am interested. I have worked a lot with the IBD team in my hospital to see how to use our EHR and data standards to collect patient data and link with the national IBD registry.

Hi - yes, I would interested!

Hello, new to the OHDSI community and interested in helping on this project.

I have interest too. My background is in health economics and outcome research, dealing with health data almost 15 years, including claim data, EHR data, registry data, clinical data and many others in the US and EU5.

IBD is one of my research area, including both Ulcerative Colitis and Chron’s disease.

Hi I am a medical student and training researcher. Have done most of my work in epidemiological modeling and statistical analysis. But I am highly interested in inflammatory conditions and want to collaborate in this effort

Hi Chen, I would also be very interested to join this group.

Thanks everyone for expressing your interest!

Conceptually, we’ll follow the successful procedure used recently for phenotyping COVID-19 (and flu) patients (link) and make use of OHDSI tools – specifically, CohortDiagnostics and PheValuator – to characterize the derived cohorts and evaluate their accuracy.

I’d like to test various algorithms for identifying IBD, Crohn’s disease, and ulcerative colitis patients – many such algorithms have been suggested, Table 2 in https://pubmed.ncbi.nlm.nih.gov/29922093 lists some examples – and would appreciate your thoughts as to which ones to focus on. We should also define cohorts of newly diagnosed patients and study the corresponding onset time.

I’ll start drafting the study protocol next week and hope to share it soon for your input. Suggestions, comments, thoughts are most welcome (here or to chen@kinstitute.org.il)


It took longer than expected, but a first version of the IBD characterization package is now (finally) ready. If I understand correctly, it should be uploaded to ohdsi-studies git, right? If so, can one of the ohdsi-studies admins – @Patrick_Ryan, @schuemie – set up a repo (IbdCharacterization) for me?


Hi, just wondering where this study is up to? We would like to contribute if possible. I see that there is a github repo but it appears empty right now?

Thansk for checking, it indeed takes much longer than hoped. But – we’re now finalizing the code, protocol, and cohrot defs and hope to upload the first version in the next couple weeks. I will post here when that happens. Thanks for your interest (and patience :slightly_smiling_face:).