Canadian Multiple Sclerosis Monitoring System: Environmental and Technic
Country Name Purpose
Status (Pilot/Active
/Inactive) Start Year Australia Australian MS
Longitudinal Study197
A nationwide project designed to facilitate new research of importance and potential benefit to people with MS and their families. The AAMSLS is intended to provide information about the full effects of MS on Australian society, including the individual and overall community cost.
Active 2001
Australian National Registry of MS Families (NRMSF)
To enable more powerful explorations into the genetic etiology of MS Inactive ?
Multiple Sclerosis Australia198 Provision of direct services to Australian residents living with multiple
sclerosis, with provision of confirmation of MS by neurologist Active ? Bosnia and
Herzegovina Unknown MS Barometer 2009—Final results (updated in 2010) indicate that a national MS register does exist. Less than 25% of persons living with MS were recorded on the register.143
– –
Canada Canadian Collaborative Project on Genetic Susceptibility in Multiple Sclerosis
(CCPGSMS) Study199, 200
The primary goal of the study is to direct efforts to pinpoint the gene or genes involved in the onset and development of MS and answer questions about the relative roles of genetic (inherited) and non-genetic
(environmental) factors in the etiology of MS
Active 1993
Croatia
(Hrvatska) Unknown MS Barometer 2009—Final results (updated in 2010) indicate that a national MS register does exist. Between 50% and 74% of persons living with MS were recorded on the register.143
– –
Germany MUSIS, SMile-Card, TQMS
Promise and MSDS201 Within the time frame that the MS-Forschungs-und Projektentwicklungs gGmbH project was initiated, a number of other MS database applications appear to be in use in Germany: MUSIS-Multiple Sclerosis Information System; SMile-Card; TQMS Promise and a new database system, MSDS (Multiple Sclerosis Documentation System), which, in 2002, was being implemented at 14 German hospitals (12 university hospitals, 1 general hospital and 1 rehabilitation hospital).
– –
Greece Unknown MS Barometer 2009—Final results (updated in 2010) indicate that a national MS register does exist. Between 50% and 74% of persons living with MS were recorded on the register.143
– –
Iceland Unknown No national MS register as of 2009; however, Iceland participated in the EMSP MS-ID pilot (2007 to 2009) and the U.K. MS Society contact indicated one may now be in place143
– –
Latvia HI Register of MS, Multiple Sclerosis Center Latvian Maritime Medicine Center202
MS Barometer 2009—Final results (updated in 2010) indicate that a national MS register does exist. Between 75% and 94% of persons living with MS were recorded on the register.143
Active 1997
an Multiple Sclerosis Monitoring System: Environmental and Technical Scan
Country Name Purpose
Status (Pilot/Active
/Inactive) Start Year Malta Unknown MS Barometer 2009—Final results (updated in 2010) indicate a national
MS register does exist. Between 25% and 49% of persons living with MS were recorded on the register.143
– –
New Zealand (Aotearoa)
New Zealand National MS
Prevalence Study (NZMSPS)203 In 2007, a research team located at universities of Otago and Canterbury launched the first national prevalence survey on MS (funded jointly by the Health Research Council and the MS Society in conjunction with the MS Society of NZ). The NZMSPS is a cross-sectional study of people with definite MS (DMS) (McDonald criteria 2005) who were a resident in New Zealand on census night, March 7, 2006. Study appears to be ongoing and has as a stated goal “to determine the level of interest among participants in establishing a New Zealand multiple sclerosis register.”
Active 2007
Russian Federation
Unknown MS Barometer 2009—Final results (updated in 2010) indicate that a national MS register does exist. Between 50% and 74% of persons living with MS were recorded on the register.143
– –
Slovenia Unknown MS Barometer 2009—Final results (updated in 2010) indicate that a national MS register does exist. Between 50% and 74% of persons living with MS were recorded on the register.143
– –
United
States Spinal Cord Dysfunction (SCD)
Registry, Veterans Affairs204 The veteran population served is tracked for clinical, administrative and outcome purposes by the SCD Registry minimal data set. Through the registration of veterans within the SCI hub and spokes system, this tool provides a database linked to other Veterans Health Information System and Technology Architecture (VistA) files, allowing providers to track veterans admitted and discharged within the medical centre and to review utilization of laboratory, pharmacy, inpatient and outpatient resources.
The local SCD Registry is also used to capture clinical aspects of care and outcome measures.
Active ?
Source
See references cited in the table.
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