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)
  • AL-Amyloidosis

You can benefit from network participation if you fulfil the following prerequisites:


Patient-level data

comprehensive, individual patient history


Disease characteristics

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?

Meeting (phone or in person) for Q&A and to provide more information
Data profiling to determine structure (no access to patient data)
Signing of Access Agreement
Data transformation*, use of HONEUR technical functionalities
Access to HONEUR portal; ready to participate/initiate research questions


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.