Frequently Asked Questions

Frequently Asked Questions

General

There are 97 Reference Centres & 14 Affiliated partners in 28 countries.

A complete list can be found here.

Endo-ERN started on March 1, 2017 and is an ongoing project, with several connecting EU grants.

Click here to subscribe to the Endo-ERN monthly newsletter, and follow us on LinkedIn, YouTube, Twitter and Facebook.

When a new call for Reference Centres to join existing ERNs will open, it will be published in our monthly newsletter.

Please also liaise with the National Coordinator(s) of your specific country for advice.

The procedure to become a patient representative can be found here.

For more information concerning ERNs in general, the application process, and procedures click here.

If the Reference Center has already been officially approved as a full member of Endo-ERN, extension of expertise to other MTGs or other MTG subthemes is organized as follows:

  • Members can expand their area of expertise/disease coverage by obtaining and/or demonstrating national endorsement for these additional subthemes.
  • With this, the center can apply to the ERN coordinator that will review the application according to the specific network criteria together with the respective MTG chairs.
  • After this assessment, Endo-ERN will officially inform you about the results, after which there will be a formal validation of the positive/negative assessment by national authorities.

The application form can be provided by the Endo-ERN Coordination Office upon request.

Information on planned medical treatment abroad can be found here.

 

Affiliated Partners

There are two types of Affiliated Partners that may be designated at this stage:

  • Associated National Centres Associated National Centres will participate in one Network only and, as defined in the 2017 Board Statement, are healthcare providers “with at least some special expertise matching the global thematic domain of a given reference network that concentrates primarily on the provision of healthcare directly related to the activities and services of this specific network, including any type of diagnostic contribution supporting this provision of healthcare. Associated National Centres can therefore comprise any of the following institutions:

    1. clinics and departments/clinical units providing direct outpatient and/or inpatient services to patients;
    2. medical and genetic diagnostic laboratories;
    3. pathological laboratories;
    4. specific facilities for instrument-based diagnostics”.
  • National Coordination Hubs National Coordination Hubs establish a link with more than one Network at once and, as defined in the 2017 Board Statement, comprise “any type of institution with the appropriate knowledge and the legal and organizational capacity to link the national healthcare system to a number or all European Reference Networks. National Coordination Hubs function as interfaces between the national healthcare system and those Networks where a given Member State is neither represented by a full member nor by an Associated National Centre. National Coordination Hubs do not need any specific medical expertise or knowledge and their composition might range from:

    1. a major national healthcare provider […];
    2. a network of healthcare providers coordinated at national level;
    3. a non-hospital based, specifically assigned institution as contact and coordination point linking the ERNs with the national system […]” such as the National Contact Points created by the 2011 Cross Border Healthcare Directive.

There are no specific criteria of affiliation to an ERN. It is a competence of Member States to designate their potential affiliated partners.

According to the Board of Member States: ERN applicants will be encouraged to liaise with National authorities, where appropriate, to identify a list of potential affiliated partners, for collaboration with the network from the outset. How-ever, for all potential affiliated partners (those identified before the ERN approval or those that will come up after the ERN approval) the affiliation process will take place only after the approval of the ERN by the Board and following the formal designation of each of the affiliated partners by its national authorities.

Find the complete text here.

Click here for more information from the European Commission.

Affiliated Partners are not members of the Networks. They are expected to establish a link to the Networks for those countries which do not have a member in a specific ERN thus addressing the concerns related to the geographic coverage of the Networks.

The Affiliated Partners will contribute to the Networks’ activities and benefit from their expertise, facilitating the sharing of knowledge across the EU. Most importantly, Affiliated Partners should act as entry points to ERNs for patients, improving the accessibility for patients across the EU. For that reason, the Affiliated Partners shall participate in the CPMS virtual consultation panels for those patients that they have referred to the Networks and may also attend some other virtual panels for their own learning purposes or to fill any knowledge gap, due to their specific expertise (e.g. in case of laboratories).

In some cases, Affiliated Partners may at a later stage, if they are healthcare providers and develop the required expertise, become ERN members. This would only happen in compliance with the procedures for membership applicable to any healthcare provider and NOT automatically or with a special procedure.

Please note moreover that an Affiliated Partner will lose its partnership i.a. if a healthcare provider from the same Member State joins the Network as a member.

The designation letter will be sent by the Member States to the Commission’s functional mailbox: SANTE-ERN-AFFILIATED-PARTNERS@ec.europa.eu and to the Coordinator of the Network that this Affiliated Partner shall join.

Evaluation

Some of the same documents that were submitted in the initial assessment can be submitted again for the Self-Evaluation (Phase2), however please ensure that they are the most current/up-to-date versions of these documents/policies.

The initial assessment will be consulted by the IEB during the technical evaluation (Phase 3).

Yes, Endo-ERN will see you final report & recommended Improvement Plan so as to assist you in any necessary changes/ activities.

No, Endo-ERN does not have any clinical indicators this time. You therefore have no data to enter into Section A.11 of the Self-Evaluation form (, 230 KB)

endo-self-evaluation-11

It is preferable that each HCP supplies their own recorded information from the continuous monitoring submission (as the ERN will provide our records in our own evaluation). If you have difficulty locating this, or there are extenuating circumstances to gathering this data we shall assist however we can.

As we are in Phase 1, we recommend starting NOW to gather data/evidence/ filling in the Self Evaluation form template. Once Phase 2 (Self Evaluation) is formally announced you will have 3 months to submit the Self Evaluation form online.

As each institution varies in size and multidisciplinary team make-up, we recommend including at minimum these personnel though please note others may need to be consulted:

  • Head of Expert Reference Centre
  • Person responsible for annual Continuous Monitoring Submission
  • The respective named Endo-ERN HCP representatives
  • A member of your rare disease office (if applicable)

During Phase 1 please utilize our website resources as best you can to answer any queries you have. If this is not possible, use the website contact form, with the subject ‘HCP Evaluation’.

Once Phase 2 begins, a technical support team will be available for any difficulties encountered when submitting online.