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The reference centres

The call for projects for a new 2017-2022 accreditation of the Rare Diseases Reference Centre (CRMR) corresponds to the first action in the 3rd National Plan on Rare Diseases and was launched in October 2016 at the request of the Minister of Social Affairs and Health.

In the field of rare diseases involving heart rhythm disorders, two centres work together: 

  • Reference Centre for Hereditary Rhythm Disorders and the Prevention of Sudden Death
  • Reference Centre for Complex Congenital Cardiac Defects
Reference Centre for Hereditary Rhythm Disorders and the Prevention of Sudden Death

The reference centre manages patients with hereditary rhythm disorders (Brugada syndrome, long QT syndrome, arrhythmogenic dysplasia of the right ventricle, etc.) and patients at risk of sudden death.

It is located in the Haut-Lévêque Cardiology Hospital and benefits from Professor Haïssaguerre's department's resources. A Competence Centre since 2008, it obtained its accreditation in May 2017 and is part of the Cardiogen national health network.

The centre's role is to improve management of patients with hereditary rhythm disorders: 

  • by offering them optimal care throughout the entire country,
  • by providing them with clear medical information, as well as healthcare professionals who will be responsible for taking care of them,
  • by ensuring that family screening is properly performed and that molecular biological data is made available to patients, their families and caregivers,
  • by setting up or participating in studies to improve the understanding and therapeutic strategies in these diseases.

The team, led by Professor Frédéric Sacher, has been working on these topics for a very long time in order to understand the causes of ventricular fibrillation (the primary cause of sudden death) better, to develop innovative therapies and to provide better management for these patients.

Since the early 2000s, the team has organised and standardised management of these patients in Aquitaine. Family screening of patients with hereditary rhythm disorders has also been implemented through co-operation with Dr Caroline Thambo (Genetics Department) and the introduction of joint consultations (cardiologist and geneticist).

Following the development of interventional techniques for the treatment of ventricular fibrillation, the centre has been receiving patients from all over mainland France, from French overseas territories, and even Europe for treatment of the most complex cases.

The centre is also dedicated to prevention by training doctors and cardiologists through CPD, training days, conferences and patient days. A website developed by Professor Bordachar is also available to doctors to allow them to familiarise themselves with aspects of the ECG which help to identify these diseases (http://pacingdefibrillation.com).

Similarly, as part of the CARDIOGEN network, the team has helped to prepare documents (available on the website: http://www.filiere-cardiogen.fr) for the information and management of patients with hereditary rhythm disorders.

Find the highlights of the first day organised in 2019 for the reference centre: here [mettre le lien vers https://www.youtube.com/playlist?list=PL-F3A1zVbf16ryfqRXMFf3dH2OCaQrwwW]

More information here

Useful links: http://www.orpha.net

Reference Centre for Complex Congenital Cardiac Defects (M3C)

The M3C reference centre is dedicated to cardiac defects at all stages of life. Its governance is ensured by a co-ordinating site (Necker Sick Children’s Hospital) and 3 member sites, including CHU de Bordeaux and Professor Jean-Benoît Thambo's team.

It provides medical-surgical management of all complex congenital heart diseases. Congenital heart defects affect one in 100 new-borns, but their huge diversity, and sometimes complexity, make each one of them a rare disease.

The M3C care network assumes a role of multidisciplinary expertise for complex defects and manages all types of heart diseases from prenatal diagnosis until adulthood.

More information here