European Reference Networks

European Reference Networks: 900 medical teams to connect across Europe for the benefit of patients

On 1 March the newly established European Reference Networks (ERNs) were established.

Video on ERNs: http://europa.eu/!kd34rM

http://ec.europa.eu/avservices/video/player.cfm?sitelang=en&ref=I140754

ERNs are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases.

There are 24 thematic ERNs, gathering over 900 highly specialised healthcare units from 26 countries, working together on a wide range of issues, from bone disorders to haematological diseases, from paediatric cancer to immunodeficiency. Joining up of EU's best expertise on this scale should benefit every year thousands of patients with diseases requiring a particular concentration of highly specialised healthcare in medical domains where the expertise is rare.

ERNs in brief

European Reference Networks (ERNs) are virtual networks bringing together healthcare providers across Europe to tackle complex or rare medical conditions that require highly specialised treatment and a concentration of knowledge and resources. They are set up under the EU Directive on Patients' Rights in Healthcare (2011/24/EU), which also makes it easier for patients to access information on healthcare and thus increase their treatment options.

In practice, ERNs will develop new innovative care models, eHealth tools, medical solutions and devices. They will boost research through large clinical studies and contribute to the development of new pharmaceuticals, and they will lead to economies of scale and ensure a more efficient use of costly resources, which will have a positive impact on the sustainability of national healthcare systems, and for tens of thousands of patients in the EU suffering from rare and/or complex diseases and conditions.

The ERNs will be supported by European cross-border telemedicine tools, and can benefit from a range of EU funding mechanisms such as the "Health Programme", the "Connecting Europe Facility" and the EU research programme "Horizon 2020".

It is envisaged that ERNs will facilitate the transfer of knowledge not patients. However, this does not preclude patients from seeking to access the specialist teams in the Networks in person. Appointments in person with an ERN team is subject to the usual provisions of the CBD as it applies in the patient’s home country.

The 24 ERNs

Full details of ERNs is available on:

http://ec.europa.eu/health/rare_diseases/european_reference_networks/erf_en

 Information on the 24 ERNs is available on http://ec.europa.eu/health/ern/networks_en

ERN   BOND

European   Reference Network on bone disorders (ERN BOND Factsheet)

ERN   CRANIO

European   Reference Network on craniofacial anomalies and ear, nose and throat (ENT)disorders (ERN CRANIO Factsheet)

Endo-ERN

European Reference Network on endocrine conditions (Endo-ERN Factsheet - Visit http://www.endo-ern.eu/)

ERN   EpiCARE

European Reference Network on epilepsies (ERN EpiCARE Factsheet - Visit https://www.epilepsyallianceeurope.org/programmes/epicare/)

ERKNet

European Reference Network on kidney diseases (ERKNet Factsheet)

ERN-RND

European Reference Network on neurological diseases (ERN-RND Factsheet - Visit http://www.ern-rnd.eu/)

ERNICA

European Reference Network on inherited and congenital anomalies (ERNICA Factsheet)

ERN   LUNG

European Reference Network on respiratory diseases (ERN LUNG Factsheet - Website)

ERN   Skin

European Reference Network on skin disorders (ERN Skin Factsheet Search for available translations of the preceding link••• - Visit http://www.ern-skin.eu/)

ERN   EURACAN

European Reference Network on adult cancers (solid tumours) (ERN  EURACAN Factsheet)

ERN   EuroBloodNet

European Reference Network on haematological diseases (ERN EuroBloodNet Factsheet)

ERN   eUROGEN

European Reference Network on urogenital diseases and conditions (ERN  eUROGEN Factsheet)

ERN   EURO-NMD

European   Reference Network on neuromuscular diseases (ERN  EURO-NMD Factsheet - Visit http://www.euro-nmd.eu/)

ERN   EYE

European Reference Network on eye diseases (ERN EYE Factsheet - Visit http://www.sensgene.com/the-ern-eye-project)

ERN   GENTURIS

European Reference Network on genetic tumour risk syndromes (ERN GENTURIS Factsheet - Visit http://www.genturis.eu/)

ERN   GUARD-HEART

European Reference Network on diseases of the heart (ERN GUARD-HEART Factsheet)

ERN   ITHACA

European Reference Network on congenital malformations and rare intellectual   disability (ERN ITHACA Factsheet)

MetabERN

European   Reference Network on hereditary metabolic disorders (MetabERN Factsheet)

ERN   PaedCan

European   Reference Network on paediatric cancer (haemato-oncology) (ERN PaedCan Factsheet)

ERN   RARE-LIVER

European Reference Network on hepatological diseases (ERN RARE-LIVER Factsheet)

ERN   ReCONNET

European Reference Network on connective tissue and musculoskeletal diseases (ERN ReCONNET Factsheet)

ERN   RITA

European Reference Network on immunodeficiency, autoinflammatory and autoimmune   diseases (ERN RITA Factsheet)

ERN TRANSPLANT-CHILD

European Reference Network on Transplantation in Children (ERN TRANSPLANT-CHILD Factsheet)

VASCERN    

European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN Factsheet - Visit http://www.vascern.eu/)

Ehealth

The Cross Border Directive like the Treatment Abroad Scheme as provided for under EU Regulations and Directives does not provide for the reimbursement of healthcare provided via telemedicine. Therefore please be advised that telemedicine is not recognized for the purposes of treatment or reimbursement under the provisions of either the Regulation or the Directive in respect of any cross border healthcare at this point in time. 

 HIPE CASEMIX (DRG coding)

A Diagnosis-Related Group (DRG) is a statistical system of classifying hospital activity into groups for the purposes of payment. The DRG classification system divides possible diagnoses into more than 20 major body systems and subdivides them into almost 500 groups for the purpose of healthcare reimbursement.

When a patient accesses healthcare abroad and seeks to be reimbursed for it under the provisions of the Cross Border Directive there is a requirement for the treatment to be identified by use of the DRG codes that are used in Ireland. The HSE has published the HIPE Ready Reckoner so that patients and more importantly their treating consultant abroad can easily identify the DRG code for the treatment the patient has accessed.

 It is only the treating consultant abroad who can identify the DRG code for the treatment he/she has provided. The referring doctor in Ireland cannot identify the code as the treatment actually provided by the treating consultant abroad may differ from the treatment envisaged by the referring doctor in Ireland. Under no circumstances will the Cross Border Directive National Contact Point staff identify a DRG code for a patient. National Contact Point staff are expressly prohibited from identifying codes for patients.

 It is the experience of the National Contact Point that there is risk that consultants abroad will seek to identify a more economically advantageous DRG code for a patient for the purposes of accessing a higher reimbursement rate that the patient is entitled to. The National Contact Point reserves the right to have DRG codes independently assess for accuracy. Any discrepancy between the reimbursement rate being paid and that expected by a patient as a result of the identification of an incorrect code by a doctor abroad will be a matter between the patient and the doctor abroad and not the HSE.