MS in IcelandMS in Iceland MS IDMS ID

Meaningful patient involvementMeaningful patient involvement

Dr. Sverrir Bergmann

MS IDEMSP 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

103.000 squarekilometers

Population 320.000 Reykjavík/SW area 230.000 Other areas 90.000

Young nation Irish monks 600 Vikings 874

IcelandIceland

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: 5-7/100.000 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: 10-19 years of age 15% 20-29 - - - 45% 30-39 - - - 28% 40-49 - - - 10% > 50 - - - 2%

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) 0 - 2.5 42% 2.5 - 4.5 29% 4.5 - 7.5 21%

8.0 + 8%

I C E L A N D - MS IDMedical 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 registrationSubsequent registration review with neurologist

GAIN(S) Information More reliable

Understanding Disease Investigations Treatment

Live Adjustment Condition Care

Co-operation Treatment

Active involvement Treatment Organization

TAKK !