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Development of ICF Core Sets for Multiple Sclerosis


The aim of the project was the development of ICF Core Sets to comprehensively describe functioning and disability of individuals with MS. The project was run in three phases. In the preparatory phase of the project four studies were conducted: (1) a systematic literture review to identify outcome measures in studies published from 2002-2006 focusing on persons with MS, (2) a qualitative study including perswons with MS, (3) an internet-based international expert survey involving health professionals (physicians, nurses, physical therapists, occupational therapists, psychologists, speech and language therapists and social workers) and (4) a multicenter cross-sectional study in Switzerland and Germany. In Phase I an international ICF consensus conference took place at the Valens Rehabilitation Centre, from 2-4 May 2008 to establish the Comprehensive and Brief ICF Core Sets for persons with MS. Twenty-one MS experts from 7 health professions (physicians, physiotherapists, occupational therapists, nurses, psychologists, speech and language therapists, and social workers) and from 16 countries decided which ICF categories are to be included in the ICF Core Sets for MS following a multi-stage, well-established decision- making and consensus process which integrated the results from the 4 preparatory studies. In Phase 2 of the project the ICF Core Sets for MS were tested and validated.


The project was a cooperative effort between Valens Rehabilitation Centre (Switzerland), the ICF Research Branch, the World Health Organization (WHO), the Multiple Sclerosis International Federation (MSIF) and the International Society of Physical Medicine and Rehabilitation (ISPRM).

Dataq of the qualitative study was collected at the Behandlungszentrum Kempfenhausen (Marianne-Strauß-Klinik). The empirical study was carried out in collaboration with Rehabilitation Center Quellenhof, Bad Wildbad (Germany), the Valens Rehabilitation Centre (Switzerland), the Clinic for Neurology at the UniversitätsSpitals Zurich (Switzerland) and the Swiss MS Society, Zurich (Switzerland).


10/2006 – 03/2010


Funded by the Gemeinnützige Hertie-Stiftung


Prof. Dr. Alarcos Cieza, MPH

Dr. Michaela Coenen, MPH


Dr. Michaela Coenen, MPH