Become a Data Partner - How To Become An HONEUR Data Partner
How to become an HONEUR data partner
HONEUR’s goal is to develop a network with diverse geographic coverage across Europe. Any registry, hospital, physicians’ association or scientific institute with patient-level data for the following diseases can become a data partner:
- Multiple Myeloma (MM)
- Chronic Lymphocytic Leukaemia (CLL)
- Diffuse Large B-Cell Lymphoma (DLBCL)
- Myelodysplastic Syndrome (MDS)
- Acute Myeloid Leukaemia (AML)
- Mantle Cell Lymphoma (MCL)
- Follicular Lymphoma (FL)
- Marginal Zone Lymphoma (MZL)
You can benefit from network participation if you fulfil the following prerequisites:
comprehensive, individual patient history
confirmed diagnosis and date of diagnosis
Patient baseline characteristics
year of birth and gender
lines of treatment with start-stop dates
time to next treatment, last follow-up, death
What are the steps to join HONEUR?
The onboarding process can vary, but from initial data profiling (a process that evaluates your data structure, not patient-level data) to signing the Access Agreement can take between 3-6 months. Subsequently, data transformation may take 3-4 months, after which you have access to the HONEUR portal and can initiate/participate in research questions.
* In a joint effort between the data partners and Janssen, data is transformed to the OMOP common data model, which was developed by the scientific community of OHDSI.