Background
There is already an active multi-site effort focused on addressing high-priority questions in pediatric cancer. As more centers adopt the OMOP Common Data Model, we now have an important opportunity to expand collaboration and accelerate research that benefits children with cancer.
Mission and Objectives
The mission of the Pediatric Cancer Workgroup is to build an international, interdisciplinary community of clinicians, data scientists and researchers committed to advancing knowledge and improving outcomes for pediatric cancer patients through shared OMOP-based research.
Initial Areas of Focus
The workgroup aims to address several questions, including:
Describing the prevalence and trends of diagnoses, treatments, and medications over time
Examining associations between potential predictors and clinically meaningful outcomes
Evaluating and characterizing adherence to clinical practice guidelines
Understanding variation in care across centers, countries and health systems
Call for Participation
We welcome additional sites and individuals interested in contributing to or leading collaborative projects in this area. We currently meet every three weeks, although meeting frequency can be adjusted based on group size and interest.
If you would like to join or learn more, please reply to this message or contact me directly.
We look forward to working together to advance pediatric oncology research through harmonized, large-scale data.
The PatientLevelPrediction workgroup will be happy to collaborate on any prediction studies. I know a lot of people in the PatientLevelPrediction workgroup are interested in federated learning and transfer learning which may be needed for some pediatric prediction questions. Let me know if you’re interested and we can set up a meeting to chat more.
I am writing on behalf of the Hungarian Pediatric Oncology Network. The network is working on a patient-centered digital solution that includes structured clinical care data. It would be nice, to collaborate—both for networking purposes and regarding the mapping of our data model.
In addition, our network operates a national pediatric oncology registry.
Does anyone have information on how a professional community (our network is also a non-profit organization) could join an OMOP database or participate as an organization in such initiatives?
Thank you very much in advance for any advice or suggestions.
Welcome to the family. Looks like there are several questions packed into your post:
Not sure what the “digital solution” is, but just to make sure you are aware that the OMOP CDM is not designed for direct patient care. It lacks all sorts of detail (e.g. identifiable information about the patient, the provider and the care site, scheduling, referrals, billing, other organizational aspects). Also, it is not designed for immediate transactions, as its focus is large scale evidence from populations over time. But that isn’t to say you can’t do it with some adjustments.
Your network, or your registry (not sure if this is one and the same) can immediately participate in OHDSI life. There is the Oncology Workgroup with a lot of community work on the mapping of cancer data to make them fit for the use cases, and the studies themselves.