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MS Register Germany

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

emery-kaufman
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MS Register Germany

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  1. MS Register Germany International MS Conference Berlin 23.9.2003

  2. 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

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

  4. 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

  5. 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

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

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

  8. Accumulation of data

  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 Age at entry Age at onset Number of patients Age (years)

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

  12. Disease severity Number of patients Not determined

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

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

  15. 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

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

  17. 2993 2050 1177

  18. Accumulation of data 2991 2050 1177

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