The Institut du Cerveau – ICM belongs to a European reference center on rare neurological diseases. The launch seminar for the European Reference Network, or ERN, dedicated to rare neurological diseases took place on May 15th and 16th and the Institut du Cerveau – ICM is a member.
This initiative brings together members from 13 European countries and aims at encouraging interaction, discussions, sharing of expertise and data transfer between European Reference Centers to benefit patients.
Ségolène Aymé, Rare Diseases Project Manager at the Institut du Cerveau – ICM and founder of Orphanet, tells us more about the Network’s goals.
HOW IS HEALTHCARE MANAGED AT THE EUROPEAN LEVEL?
Every European country is independent in its healthcare policy. Healthcare is not a European Community competency as it is out of treaty and cannot be managed on a European level. The only possible European action is helping countries cooperate.
Currently and for the past couple of years, an increasing number of travelers visit Europe and receive care in countries other than theirs. Countries must therefore agree on various points such as medical fee reimbursement or patient rights. In this context, a guideline on cross-border medical care was implemented two years ago. It aims at opening healthcare to all European citizens in every member country as well as allowing collaboration and resource-sharing among countries.
HOW WERE EUROPEAN REFERENCE NETWORKS CREATED AND WHAT IS THEIR OBJECTIVE?
A very important aspect of the guideline was the creation of European Reference Networks (ERN), especially focused on rare illnesses. The goal is to identify expertise and cutting-edge platform technology in each country so that every European citizen can access these resources, even if they are located outside of their home country. These ERN are a way of improving overall quality of healthcare.
Expertise travels, not the patient. The ERN’s main mission is patient care: organizing teleconsultations, meetings among experts to solve difficult cases, involving a larger number of patients in clinical trials, as well as homogenizing clinical methods and collecting comparable data.
WHAT WAS THE GOAL OF THE RARE NEUROLOGICAL DISEASES NETWORK LAUNCH SEMINAR?
The goal of the seminar was to agree on a work package and define a roadmap for the 5 coming years.
Institut du Cerveau – ICM clinicians are very proactive within the network. Alexandra Durr, leader of the task force dedicated to clinical diagnosis, presented a roadmap on European organization of rare neurological disease diagnosis. The goal of the work package is to advise on the best way of setting a clinical and molecular diagnosis on a European level. Isabelle Leber is coordinator for the task force dedicated to fronto-temporal dementia and Marie Vidailhet is coordinator for the task force dedicated to dystonia, paroxysmal disorders and neurodegeneration with brain iron accumulation.
WHAT IS THE FOCUS FOR THE NEXT 5 YEARS?
Nearly one half of patients affected by a rare neurological disease cannot be classified as a specific pathology. The network will enable the design of a shared database to help make a precise diagnosis for as many patients as possible and in hopes of identifying new neurological illnesses. 50% of rare neurological diseases currently remain unidentified.
This cooperation will also facilitate clinical trials and patient recruitment when new therapy options are made available. Healthcare and research inseparable!