MS in Iceland MS ID MS ID Meaningful patient involvement Dr. Sverrir Bergmann

MS ID EMSP and EU Standardized MS (European) register General Informative Combined Purposes Participiants: Germany Great Britain Iceland Poland Rumania Spain Pilot study 2008 – manuscript accepted

MS ID Medical register Socio economic register Meaningful patient involvement Epidemiological data Code of Good Practice Cost/benefit Patient understanding

squarekilometers Population Reykjavík/SW area Other areas Young nation Irish monks 600 Vikings 874 Iceland

I C E L A N D - MS Epidemiological studies: 1962, 71, 73, 80, 84, 94, 98, 2009 Prevalence: 1.4/1000 MS ID already registered cases 380 MS ID to be registered cases 60 Incidence: 5-7/ per year No epidemic period No relation to epidemics - including measles Equally spread – no clusters No relation to occupation Familial incidence: 10% of families – - 2 or >2 case in 3 generations M/FE ratio 32/68

I C E L A N D - MS Onset age: years of age 15% % % % > % Mean onset age 29.4 years of age Onset symptoms: Motor 34% Sensory 34% Optic neuritis 18% Other 14% Encephalopathia Fatigue Psychiatric features Pain Epilepsy

I C E L A N D - MS Disease type: (or course) CIS 2% R/R 65% R/R + secondary progression 27% Primary progressive 6% EDSS (Mean > 20 years) % % % %

I C E L A N D - MS ID Medical register Epidemiological data Medical/Paramedical state: All PwMS under the care of neurologist All necessary investigatory facilities available All treatment available – symptomatic and DMT All necessary paramedical treatment available Easy access everywhere in the country Waiting time in days only for neurological consultation and future care and for investigations and for all types of treatment Currently 45% PwMS on DMT

I C E L A N D - MS ID Social register Registration by PwM Marital state Education Occupation Course of disease Personal assessment Medical treatment Paramedical treatment Social assistance Home help Home care Facilities in general Social activity Understanding Disease Condition Symptoms Treatment

I C E L A N D - MS ID PwMS involvement/co-operation PwMS own registration Subsequent registration review with neurologist GAIN(S) Information More reliable Understanding Disease Investigations Treatment Live Adjustment Condition Care Co-operation Treatment Active involvement Treatment Organization

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