The Global CADASIL Consortium (GCC)
Initiative established in 2023 bringing together CADASIL researchers and clinicians from around the world. The GCC aims to improve global collaboration in CADASIL and harmonise CADASIL research.
What is CADASIL?Ìý
CADASIL (also known as cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) is a rare disorder caused by a mutation in the NOTCH3 gene. This mutation affects the walls of small- and medium-sized blood vessels and impedes the flow of blood to the brain.
There is no single presentation of CADASIL but the first signs usually appear around midlife, and slowly progress. These often include:
•ÌýÌý ÌýMultiple small strokesÌý
•ÌýÌý ÌýComplex migraine
•ÌýÌý ÌýDecline in cognitive processing and ability
•ÌýÌý ÌýApathy or other mood disturbance
•ÌýÌý ÌýSeizures
"As there is no cure for CADASIL, treatment focuses on reducing symptom severity, and support from medical professionals, counsellors, family and friends."
CHeBA Consortia
What is the Global CADASIL Consortium?
Since CADASIL is rare, cohorts are often moderate in size or region-specific. The Global CADASIL Consortium (GCC) is an international effort, led by the Centre for Healthy Brain Ageing (CHeBA). The GCC aims to harmonise CADASIL research by bringing together experts in the field, all with a common goal of improving CADASIL research and understanding. There are currently 46 confirmed members of the GCC from 17 countries who represent 14 cohorts/registries (AusCADASIL, CADREA, DiViNAS, VascBrain, CADAGENIA, US CADASIL Consortium, NCLCAD, RARHES, HEALER, CADASILas, GENICA, French CADASIL Cohort, Finnish CADASIL Cohort and NIH CADASIL Disease Discovery Study).
For more information or to join the Global CADASIL consortium, please contact Dr Saks or Professor Sachdev.
Team
Contacts
Dr Danit Saks
EÌýd.saks@unsw.edu.au
Post-doctoral researcher for the Vascular Contributions to Dementia Centre of Research Excellence (VCD-CRE) and Study Coordinator of AusCADASIL
CHeBA (Centre for Healthy Brain Ageing), ºÚÁÏÍø´óÊÂ¼Ç Medicine
Scientia Professor Perminder Sachdev
EÌýp.sachdev@unsw.edu.au
Co-Director CHeBA (Centre for Healthy Brain Ageing), ºÚÁÏÍø´óÊÂ¼Ç Medicine