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National MS Register in Germany: Insights from the Berlin Conference, Sept 2003

The Berlin conference on September 23, 2003, highlighted the establishment of a national MS register in Germany. With an estimated 80,000 to 120,000 patients, the medical and social situation of many MS patients remains largely unknown. Studies indicate that many patients are not regularly seen by neurologists, and treatment utilization is unclear. The pilot phase, initiated in 2002, involved five centers documenting data from 3,000 patients. Future plans involve expanding the registry to include over 12,000 patients for more comprehensive longitudinal and subgroup analyses.

emery-kaufman
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National MS Register in Germany: Insights from the Berlin Conference, Sept 2003

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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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