MS Register Germany

International MS Conference

Berlin 23.9.2003

Situation

Prevalence: 80.000 - 120.000 patients Only small regional epidemiological studies

available Medical and social situation of MS patients is largely

unknown Many patients not regularly seen by a neurologist Prescription and utilization of medical treatment

unclear

Goals

Nation-wide MS register

Data on course and treatment of MS

Evaluation of a basic data set for

prospective documentation

Questions ?

Prevalence of disease subtypes Initial symptoms, diagnostic procedures Interval from first symptom to diagnosis Distribution of disease severity Social situation of MS patients Ressource utilization and quality of care Treatment status

Development of project

03/2001 Definition of goals for the register; Initial study protocol

09/2001 Basic documentation data set 12/2001 Approval of the protocol by MAB

and regional authorities 01/2002 Start of pilot-phase (5 centers) 09/2002 Evaluation of 6 month data 09/2003 Evaluation and presentation of

18 month data

Participating centers

Selection criteria: Regional center

Out-patient department

Representative regions

3 x university hospitals

1 x general

hospital 1 x

neurologist in practice

Data transfer - evaluation

Local electronic data documentation

Transfer via

Internet or CD

Data analysis atthe MSPDgGmbH

U. Götze

SLCMSR

Accumulation of data

Berlin 372 526 759

Bochum 117 458 517

Hamburg 44 145 219

Rostock 170 232 344

Würzburg 474 689 1154

Total 1177 2050 2991

Date 31.7.02 20.11.02 26.05.03

ERGEBNISSE

Zentrum Anzahl Frauen Dauer Diagnose

Berlin 759 74 % 12,7 9,2 4,0 6,2

Bochum 517 65 % 12,8 8,9 3,7 5,9

Hamburg 219 79 % 9,5 8,0 2,4 4,6

Rostock 344 75 % 11,6 8,8 4,1 6,2

Würzburg 1154 70 % 10,4 7,8 3,0 4,7

GESAMT 2993 71 % 11,5 3,5

Dauer: Krankheitsdauer in Jahren, Diagnose: Zeitdauer vom Erstsymptom bis zur Diagnosestellung in Jahren (Mittelwert Standardabweichung).

Basic demographics

Center # of pts. % female disease time to duration diagnosis

Disease duration and time to diagnosis in years (mean +/- s.d.)

Alter (Jahre)< 11 11-20 21-30 31-40 41-50 51-60 > 60

Anza

hl d

er P

atie

nte

n

0

200

400

600

800

1000

1200

1400

aktuellKrankheitsbeginn

Disease onset and age at entry into registerN

um

ber

of

pat

ien

ts

Age at onset Age at entry

Age (years)

Disease course

CIS RR SP mit SP ohne PP nicht nicht

Ante

il der

Pat

iente

n (%

)

0

10

20

30

40

50

60

70

Schübe bestimmbar erfasst

53

1800

368462

6665179

Anzahl der Patienten

Per

cen

tag

e o

f p

atie

nts

CIS RR SP+ SP- PP trans. n.d.relapse

absolute numbers

Disease severity

EDSS0 1 2 3 4 5 6 7 8 9

Anza

hl d

er P

atie

nte

n

0

100

200

300

400

nicht

erfasst

Nu

mb

er o

f p

atie

nts

Notdetermined

Employment situation

Anzahl der Patienten0 100 200 300 400 500

Ausbildung

berufstätig

Teilzeit

arbeitslos

berentet (BU)

berentet (EU)

Altersrente

Umschulung

nicht erfasst

0 200 400 600 800 1000

Number of patients

educationemployedpart timeunemployedretired (age)retired (MS)retired (other)job trainingn.d.

39%

32%

Disease modifying treatment (DMD)

Anzahl der Patienten0 300 600 900 1200

Cyclophosphamid

Methotrexat

Steroide - Puls

IVIg

Azathioprin

Steroide - LZ

Mitoxantron

GLAT

IFN beta

Keine

0,3 %

0,5 %

2,1 %

3,0 %

4,1 %

5,3 %

7,9 %

12,0 % 36,2 %

26,4 %

Number of patients

no DMD

MS register Germany:Pilotphase - Summary

Electronic documentation of basic data set from 3000 patients

in 5 regional centers

Comparable results to other large epidemiological studies

(e.g. disease onset, EDSS distribution)

Mean interval from first symptom to diagnosis: 3.5 years

Early retirement due to MS: 32%

Most patients (> 70%) are on disease modifying treatment

Future

Extension phase: 20 centers

Basic data set from > 12.000 pts.

Longitudinal analysis

Subgroup analysis Cooperation with SLCMSR

1177

20502993

Accumulation of data

1177

2050

2991