Expertise

Workstreams & Expertise

ERN eUROGEN has three different Workstreams (WS) divided into Expertise Areas (EAs), which contain the rare diseases and complex conditions it covers. Each WS has a Workstream Lead (WS Lead), Clinical Lead, Education Lead, and Research Lead, and each EA has an Expertise Area Coordinator (EAC) and vice-EAC.

NOTE: ERN eUROGEN offers expertise in intricate cases encompassing differences in sex development (DSDs) (EA 1.1) and transgender patient surgery (EA 2.7) which pertain to individual identities, not diseases and disorders. As such, the network refers to expertise areas rather than disease areas, aligning with the EU’s principles of equality, diversity, and inclusiveness.

Expertise Coverage

The below table shows ERN eUROGEN’s HCPs’ coverage of EAs on one page (as of 26 June 2023):

HCP-Disease-Area-Coverage-Table-for-website-26-06-2023

Open as a pdf in a new window.

Standards & Evidence

To join ERN eUROGEN, Full Member and Affiliated Partner healthcare providers (HCPs) must show evidence of covering Expertise Areas (EAs) and that they meet the network-specific criteria related to these to ensure they have the required standards of expertise and resources to treat patients appropriately and effectively. The network has a protocol for filling gaps in and reviewing existing criteria using data from annual monitoring exercises and input from network experts and the ePAG.

Expansion of Expertise

HCPs can apply to the Board of Member States for ERNs (BoMS) to expand their expertise due to staff changes or new endorsements by national health ministries. ERNs can also apply to the BoMS to extend their EAs and include additional rare diseases and complex conditions. ERN eUROGEN is currently awaiting a decision about expanding its EA coverage to include male infertility, paediatric renal transplantation in urology, paediatric oncological urology, and rare bladder tumour surgery.

Overlap of Expertise

ERN eUROGEN and ERN ERNICA, the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies, overlap in clinical scope for Hirschsprung’s disease and Anorectal Malformations. ERN eUROGEN covers Anorectal Malformations, while ERN ERNICA addresses Hirschsprung’s disease. ERN ERNICA’s coverage for Hirschsprung’s is available on their website.