SIVMS

Objectives of the study

1. To organize and conduct the first large, observational, prospective, population-based study of IVMs by establishing a collaborative National Disease Register for IVMs in Scotland
    
2. To establish the incidence and prevalence of IVMs using this population-based design
    
3. To secure complete, long-term prospective follow-up of a growing cohort of patients newly-diagnosed with IVMs in order to:
   • establish prognosis
   • observe the outcome of treatment
      
4. To develop prognostic models for people with IVMs
    
5. To form the foundation for related studies:
   • investigate the genetic contribution to the etiology, angioarchitecture, prognosis and response to treatment of IVMs
   • assess observer variability amongst experienced Neuroradiologists in the interpretation of angiograms of AVMs
   • form a methodological basis for a planned AVM disease register in the United Kingdom and a planned population-based study in Western Australia, which could enable future collaboration

Inclusion criteria

• Age 16 years or over at the time of diagnosis
   
• Permanently resident in Scotland at the time of diagnosis
   
• Date of diagnosis (by imaging or histology) after 1st January 1999
   
• Any of the principal sub-types of IVM:
  1. Arteriovenous malformation of the brain (AVM)
  2. Cavernous malformation (CM)
  3. Venous malformation (VM) including asymptomatic venous anomalies
  4. Dural arteriovenous malformation (DAVM) including carotid-cavernous fistulae

Exclusion Criteria

• Failure to meet all the inclusion criteria
   
• Incorrect diagnosis of an IVM
   
• Capillary malformation/telangiectasis
   
• Vein of Galen malformation
   
• Capillary malformation/telangiectasis
   
• Spinal vascular malformation

Bramwell Dott Building
Department of Clinical Neurosciences
Western General HospitalS NHS Trust
Crewe Road, Edinburgh, Scotland
EH4 2XU

SIVMS@skull.dcn.ed.ac.uk
Tel: +44 131 537 2944
Fax: +44 131 537 2944

Website: http://www.dcn.ed.ac.uk/ivm/