MS Register Germany International MS Conference Berlin

Situation l Prevalence: 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

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

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

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

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

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

Accumulation of data Berlin Bochum Hamburg Rostock Würzburg Total Date

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

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

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

Disease severity Number of patients Not determined

Employment situation Number of patients education employed part time unemployed retired (age) retired (MS) retired (other) job training n.d. 39% 32%

Disease modifying treatment (DMD) Number of patients no DMD

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

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

Accumulation of data