The CRMR Wilson
The mission of the Reference Centre for Rares Diseases (CRMR): Wilson’s Disease and other rare diseases linked to the copper is to improve the management of patients suffering from this condition.
It is coordinated by Dr. Aurélia Poujois and is based in the Neurology Department at Fondation A. de Rothschild, 29 rue Manin 75019 Paris.
The CRMR was accredited by the French Minister for Health and Solidarity in October 2005 (Decree dated 06 October 2005, Journal Officiel 246 of 21 October 2005). It was gradually set up throughout 2006. In September 2017, the CRMR has been re-accredited (Bulletin Officiel of 15/09/2017).
The CRMR associates clinical teams with complementary skills to enable the optimum management of patients with Wilson’s disease, from infancy to adulthood.
The missions of the CRMR Wilson are to:
- Organise the availability of care
- Coordinate the management of patients
- Manage patients because diagnosis and treatment are particularly complex
- Organise multidisciplinary consultations
- Define guidelines and treatment protocols
- Inform and train health professionals
- Coordinate research activities
- Assure epidemiological watch and patients follow up
The CRMR Wilson is a multi-sites centre which comprises:
- 1 coordinator-site based at Fondation A. de Rothschild (Paris)
- 1 constituent-site: Hôpital Femme-Mère-Enfant (Lyon)
- 8 competence centres: Marseille (La Timone), Paris (Necker), Paris (Paul Brousse), Besançon, Bordeaux, Lille, Rennes and Toulouse
At each site, multidisciplinary teams of paediatricians, hepatologists and neurologists can manage patients with Wilson’s disease and ensure their outpatient follow-up with open-care physicians.
Nurses trained in managing the disease provide information for patients and their families. For patients who require it, a rehabilitation plan can be set up with the family by doctors, physiotherapists, speech therapists and social workers. The psychological monitoring of patients can also be organised.
The objectives of the CRMR Wilson are to:
- provide training for health professionals involved in managing this disease
- try to better understand the epidemiology of the disease by maintaining a register of all patients with Wilson’s disease who consult doctors in France
- work in close collaboration with the European network of health professionals and patient associations involved in this disease: EUROWILSON
- work closely with the Association Bernard Pépin for patients with Wilson’s disease, whose head office is based at Hôpital Lariboisière in Paris