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Registry data to OMOP CDM Work Group

Good morning fellow OMOPers!

I’m involved in a project that wants to leverage the use of real world data from European and other international Multiple Sclerosis registries by transforming the data to OMOP CDM.
Since the registries are heterogeneous in their data (data types, format, export files, variables etc.), this is a huge task to tackle. One reason to go with the OHDSI approach was the big, supportive community behind it. That’s why I’m reaching out to you now.

I’m looking for fellow data scientists, researcher, developer, doctors, nurses, students - whoever! - who would like to form a work group concerning registry data and its transformation to OMOP CDM. The use case of the registry is not important.

Feel free to contact me, if you’re interested!
Cheers, Tina


Very interesting a nice topic.

The clinical study workgroup was meant to subsume observational studies. (including a registry)

Many folks wanted to truly be just clinical trial WG. I think that group should tackle many studies. Even ClinicalTrials.gov takes registries as the study type…

The UK Biobank as subgroup of Clinical Study WG is in line with your proposal above.

At The Hyve we are rapidly gaining a lot of experience with mapping trial and registry data to OMOP and we are building conventions around that in the Clinical Trial WG. As Vojtech suggested, that would be the working group to also bring registries under. If this requires renaming and restructuring of the existing CT WG to reflect that, I am willing to press for that.

@sonia This goes a bit further than the offline conversation we had on bringing UKB group in as a subgroup. The above proposed structure would be something like:

  • Clinical study WG
    • Clinical Trial (SDTM) subgroup (existing group)
    • Registry subgroup (proposed here)
    • OMOP CDM Conventions subgroup (existing focus group)
    • subgroups per selected dataset

How do you feel about this? I think it makes a lot of sense to do so, but that might be biased by my perspective from The Hyve. Of course we need a discussions with the broader CT WG first, but that is on the agenda already.

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we have already stated in Clinical Trials WG that SDTM can be used for clinical trial data, registry data and many other use cases. We have done all of these as well - these are very common.

But why do we need yet another sub-WG? Let’s just tackle all these one by one within our existing WG? Just being concise about bandwidth and how many more parallel streams we can swallow as well as definite overlap between these topics. would really like to see us release something first before jumping on another problem.

I fully support Maxim’s proposal for:

Also, the meetings can be combined (as needed) with the “mother” study WG. (as Greg suggests). But I think subgrouping is a good thing.

This is exciting! FYI there is an effort to define a hashing strategy for linking OMOPed data contributed to the National COVID Cohort Collaborative so it can be linked to registry and trial data from the same site under appropriate governance. In addition to expanded analyses, that will allow for validation of OMOP phenotypes to be compared to gold standard from those manually collected data sources.
Anyhow we might want to stay in the loop with the hashing strategy they define and accommodate in this work.

Hi folks,
sorry for not responding for quite some time. COVID-19 came and shifted my focus away from OMOP. But I’m back :wink:
Since it has been a while - whats the current status on the WG vs sub-WG?I don’t know anything about the clinical study WG and their aim, are there any documents on it? Or are there open calls?

Hi OHDSI community.

me again…I thought I’d give it another try due to current demand.

Are there other (disease-specific) registry associates (data holders, data scientists working with registry data etc) who are interested in building a work group?
In preparation of the transformation of registry data to the OMOP CDM within the EHDEN data partners call, it became clear, again, that the exchange between domain specific stakeholders would be very helpful. So if anyone is interested in getting together, I’m looking forward to your expression of interest! :slight_smile:


Hi @Qubit, we are thinking of continuing the UKB Working group as the Registry WG. During the community call this Tuesday, I will give an update on this.

~Do you have some examples of specific challenges that you would want to have addressed in a Registry WG?~

edit: I noticed you actually already replied in another thread with these challenges: New working group: Clinical Trials. Thanks!

Hi @MaximMoinat,
I just saw the recording! I’m really happy that you want to go along with my idea/wish for a Registry Working Group! :slight_smile:

You mentioned the next WG meeting is on the 21th - at 4 PM CEST, correct?
I probably have to register here, right?

That is indeed correct. Looking forward to seeing you in the working group! Let me know if you have issues joining the MS Teams environment. You can reach me directly at maxim @ thehyve.nl

Hello everyone. I am new to this forum and to OMOP. I work at Critical Path Institute, where we are building the Rare Disease Cures Accelerator Data and Analytics Platform (RDCA-DAP). The platform integrates data from multiple sources, including patient registries. We have chosen OMOP CDM as our common data model, and we would love to be part of the Registry WG. I will register with the link mentioned above.


Welcome Ramona! Will be great to have you on board.

Hi There,

My name is Daniel and I too work at Critical Path. I would really like to be part of this working group as well. Thank you.

Hi Daniel, feel free to register for the workgroup in the link I gave on May 5 (shouldnt you have done that already).
Mext workgroup meeting is on the 27th August (summer break til then). Topic: the first experiences of transforming data from one MS registry to OMOP CDM (early stage still). Looking forward to meet/see you all then!

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Hi Tina,
Thank you for sending the link. I signed up immediately and had the calendar invite sitting in my outlook calendar but had never actually ‘accepted’ the invite. Thank you for the reminder! See you then.