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
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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

 

Medications

lines of treatment with start-stop dates

 

Outcomes

time to next treatment, last follow-up, death

What are the steps to join HONEUR?

1
Contact HONEUR Leads
2
Meeting (phone or in person) for Q&A and to provide more information
3
Data profiling to determine structure (no access to patient data)
4
Signing of Access Agreement
5
Data transformation*, use of HONEUR technical functionalities
6
Access to HONEUR portal; ready to participate/initiate research questions

Timelines

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.

ITEM CODE: CP-180162 | DATE OF PREPARATION: SEPTEMBER 2020