1. MS Register Germany International MS Conference Berlin 23.9.2003

2. Situation l Prevalence: 80.000 - 120.000 patients l Only small regional epidemiological studies available l Medical and social situation of MS patients is largely unknown l Many patients not regularly seen by a neurologist l Prescription and utilization of medical treatment unclear

3. Goals l Nation-wide MS register l Data on course and treatment of MS l Evaluation of a basic data set for prospective documentation

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

5. Development of project l 03/2001Definition of goals for the register; Initial study protocol l 09/2001Basic documentation data set l 12/2001Approval of the protocol by MAB and regional authorities l 01/2002Start of pilot-phase (5 centers) l 09/2002Evaluation of 6 month data l 09/2003Evaluation and presentation of 18 month data

6. Participating centers Selection criteria: l Regional center l Out-patient department l Representative regions l 3 x university hospitals 1 x general hospital 1 x neurologist in practice

7. Data transfer - evaluation Local electronic data documentation Transfer via Internet or CD Data analysis at the MSPDgGmbH U. Götze SLCMSR

8. Accumulation of data Berlin372526759 Bochum117458517 Hamburg44145219 Rostock170232344 Würzburg4746891154 Total117720502991 Date31.7.0220.11.0226.05.03

9. Basic demographics Center# of pts. % female disease time to duration diagnosis Disease duration and time to diagnosis in years (mean +/- s.d.)

10. Disease onset and age at entry into register Number of patients Age at onset Age at entry Age (years)

11. Disease course Percentage of patients CIS RR SP+ SP- PP trans. n.d. relapse absolute numbers

12. Disease severity Number of patients Not determined

13. Employment situation 0 200 400 600 800 1000 Number of patients education employed part time unemployed retired (age) retired (MS) retired (other) job training n.d. 39% 32%

14. Disease modifying treatment (DMD) Number of patients no DMD

15. MS register Germany: Pilotphase - Summary l Electronic documentation of basic data set from 3000 patients in 5 regional centers l Comparable results to other large epidemiological studies (e.g. disease onset, EDSS distribution) l Mean interval from first symptom to diagnosis: 3.5 years l Early retirement due to MS: 32% l Most patients (> 70%) are on disease modifying treatment

16. Future l Extension phase: 20 centers l Basic data set from > 12.000 pts. l Longitudinal analysis l Subgroup analysis è Cooperation with SLCMSR

18. 1177 2050 2993

19. Accumulation of data 1177 2050 2991