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ERN-EuroBloodNet mapping of healthcare services in Rare Hematological Diseases

ERN-EuroBloodNet mapping of healthcare services in Rare Hematological Diseases (RHDs) and its monitoring based on key performance indicators (KPIs) is cornerstone for setting the basis for a European model of networking. They rely on a validated identification of experts and Highly specialized procedures (HSP) at both the national and European levels.  It also arises the need for cross border health based on existing gaps in certain Member State for clinical management of a specific condition while allows health planning and better allocation of resources.

Making this expertise public through EuroBloodNet members' profile allows the establishment of new bridges for collaboration not only among experts but also with other European bodies such as EMA while enabling health professionals and patients seeking for best healthcare services across Europe. The EuroBloodNet mapping of healthcare services in RHD will also provide valuable information for identifying needs on best practices, continuing medical education and clinical and translational research.  In addition, the incorporation of KPIs on patients' activity and HSPs will also contribute to the EC assessment of network and members' excellence. 

ERN-EuroBloodNet aims to build a central repository of reliable sources of information on expertise available at both national and European level in RHDs. To this aim, RHDs have been grouped into disease or disease groups (RHD-DGs) based on the analysis of codification schemes (ORPHA and ICD) for definition of rare diseases. Disparities and gaps identified will be reported to corresponding bodies.

Rare Hematological Diseases - Disease Groups

ERN-EuroBloodNet disease coverage includes more than 450 different entities with differential clinical and etiological features i.e. oncological vs non-oncological, hereditary vs acquired, or significant difference frequency, among others. However, some of these entities, especially those of the deeper levels in the classification, can be grouped attending to the expertise and procedures required for the appropriate healthcare provision to patients and the need for its monitoring at national level.

In this context, efforts have been performed for the establishment of Rare Hematological Diseases-Disease Groups (RHD-DG) in order to become the center piece of the ERN-EuroBloodNet central repository for:

  • Mapping of experts: disease coverage
  • Mapping of patients and HSPs through members' reporting on KPIs: number of patients/new patients and number of procedures HSPs
  • Classify the contents of the website, i.e. Guidelines, educational material.

A first version of RHD-DGs has been defined based on an analysis of OPHANET and ICD codification schemes:

  • ORPHA classification (promoted by Orphanet) represents the only structured nomenclature specifically created for Rare Diseases (RDs) and the one with wider coverage of RDs.
  • ICD 10/11 classification (promoted by WHO) is the foundation for the identification of health trends and statistics globally, and the international standard for reporting diseases and health conditions. It represents the usual classification used in clinical practices.

As a result of the revision and discussion of the RHD-DGs during the Board of the Network meeting (13-14 November 2019, Barcelona), a total of 70 RHD-DG has been identified. RHD-DGs and disorders included are currently under revision for final approval.

Bone marrow failure and hematopoietic disorders

12 disease groups encompassing 42 disorders

Haemochromatosis and other iron disorders

11 disease groups encompassing 29 disorders

Bleeding-coagulation disorders

9 disease groups encompassing 70 disorders

Myeloid malignancies

9 disease groups

Euro Blood Net