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The Catalonia MS Registry is a population-based surveillance tool to determine disease incidence, geographical distribution, time trends and survival studies.  It is continously updated and in provides useful data that contributes to decision-making in health policy and resource allocation. 

The Registry started in January 2009 after completing a three month pilot phase. It is a multicentric initiative based on the collaboration of several hospitals specialized in the management of MS and representative of different regions throughout Catalonia. New MS cases are notified on-line using an specific software with secure access. The diagnosis validity is  high due to the  systems automatic diagnostic criteria application.  Information completeness is assured by the periodical evaluation by the staff of the registry and feedback to collaborating centers. The Registry ensures fulfilment of actual requirements in patients data confidentiality. 

 

Epidemiology


Highlights

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Desde el pasado 20 de marzo el Registro EPIDEMCAT permite introducir pacientes prevalentes, es decir, aquellos con inicio de los síntomas antes de 2009 para las formas en brotes y antes del 2006 para las fomas de inicio progresivo. De esta forma, el Registro será completo, permitiendo conocer el impacto global de la enfermedad en Catalunya. Para facilitar la identificación de los pacientes, se ha sustituído la calve identificativa DNI por el CIP.

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El pasado mes de octubre de 2012 se celebró una reunión de trabajo con los participantes en el Registro con una doble finalidad: dar a conocer los datos trascurridos 3 años de funcionamiento y explorar opciones de mejora y expansión del registro. Para más información consultar acta reunión.

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By january 2012, The MS Registry of Catalonia includes over 600 patients.

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An European Registry of MS (EUReMS) is starting. The European Multiple Sclerosis Platform (EMSP) is coordinating the project EUReMS, carried out by a multidisciplinary team and funded from the European Commission. The CEM-Cat has been selected by the European Multiple Sclerosis Platform as one of the centers participating in the project. Learn more.

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