The Scottish Intracranial Vascular Malformation Study (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/

UFR Médicale Lariboisière Saint Louis

Mme Pr Elisabeth Tournier-Lasserve
Libellé du laboratoire ou service
INSERM E 365 - Génétique des maladies vasculaires

Adresse:
Génétique des maladies vasculaires
Faculté de Médecine Lariboisière
10 Avenue de Verdun
75010 PARIS
FRANCE

Téléphone: 01 44 89 77 50
Fax: 01 44 89 77 55
Email: tournier@necker.fr