[Data on multiple sclerosis in Germany and their representation in the ambulatory registry NeuroTransData (NTD) network].

AIMS AND
METHODOLOGY: Description of basic data, common symptoms and their medical, non-drug and combined symptomatic treatment in a large sample of MS patients undergoing outpatient treatment of the German NeuroTransData (NTD) physician network.
RESULTS: Currently there are 21,407 patients in the registry. Average age is 49.0 ± 13.0 years, 72,3 % of them female, average disease duration is 14.3 ± 8,9 years. Relapsing-remitting MS (RRMS) was present in 77 %, secondary-progressive MS (SPMS) 15 %, PPMS 5 %. The mean EDSS score of the total sample was 2.8 (range 0,5-8). Fatigue was the most common symptom in all subtypes (96 %), followed by spasticity (all 31 %, SPMS: 47 %; PPMS 36 %). Regarding symptomatic drug treatment, non-drug treatment and combined treatment, there was a wide range of variation. While spasticity was treated in 81 %, only 21 % of patients with fatigue receiving any form of therapy, Also, fecal and urine incontinence often remained untreated in 69 % resp. 56 % of cases.
CONCLUSIONS: Setup, development and maintenance of a registry for a complex and chronic disease like MS represents an instrument to assess and improve patient care in the outpatient setting. Our results are hard to compare with the DMSG-registry, another German, more hospital-based data collection. However, both registries identify fatigue as the most common symptom in MS. © Georg Thieme Verlag KG Stuttgart · New York.